Individuals’ perceptions of health and well-being in the context of stereotactic radiosurgery for benign brain tumour: A longitudinal qualitative investigation

ABSTRACT

Background and objectives: Treatment-related outcomes after Gamma Knife Stereotactic Radiosurgery (GKSRS) for benign brain tumour are well-established; yet patient reported outcomes have been largely overlooked. This study explored individuals’ perspectives of their health and well-being prior to and following GKSRS. Method: Twenty adults (65% female) aged 24–71 years with benign brain tumour were recruited from a major metropolitan hospital and assessed approximately one week prior to, two weeks after, and at three months following GKSRS. They completed telephone-based interviews focusing on general health, symptoms, and well-being. Interviews were transcribed and analysed using thematic analysis. Results: Three major themes characterized individuals’ perceptions of their health and well-being. “Understanding my Illness and Treatment” reflected individuals’ efforts to make sense of their illness and symptoms to reduce ambiguity and increase sense of control. “Experiencing Gamma Knife” related to expectations of the procedure, outcomes, daily impacts, and emotional reactions. “Adjusting one’s Mindset and Coping” characterised how peoples' approaches to coping with their illness were altered over time. Conclusions: Coping and adjustment is highly individualistic in the context of GKSRS. Over time, most individuals were able to make sense of their illness, adjust their mindset and utilize behavioural strategies and support systems to cope with the long-term effects.

KEYWORDS:

• Stereotactic radiosurgery
• benign brain tumour
• thematic analysis
• coping
• adjustment
• Gamma Knife

Introduction

Benign brain tumours are relatively rare (23.41 per 100,000 persons; Ostrom et al., 2019) and represent approximately 63% of all primary brain tumours. Common types include meningioma, pituitary adenoma, and acoustic neuroma (Barnholtz-Sloan et al., 2018; Kshettry et al., 2015). They are characterised by slow growth and favourable outcomes in most cases (Mellado-Calvo & Fleminger, 2009), but may pose a serious threat to life and result in major functional and neurocognitive deficits in some cases, if not controlled.

Sensory, motor, cognitive, language and behavioural deficits can arise from compression and displacement effects of the tumour or treatment-related impacts (Mellado-Calvo & Fleminger, 2009; Ownsworth, 2016). When required, surgery and radiotherapy are the most common treatment modalities, either in isolation or combined. Treatment can help to improve or reverse deficits caused by the tumour but can also lead to neurotoxicity or damage caused to healthy tissue (Dropcho, 2010; Ownsworth, 2016).

Stereotactic radiosurgery (SRS) provides a non-invasive alternative to conventional open surgery in appropriately-selected patients with a variety of neurological conditions, including primary and metastatic brain tumour, vascular disorders (e.g., arteriovenous malformations), essential tremor and trigeminal neuralgia (Kondziolka et al., 2008; Vermeulen & Kim, 2014). In SRS, a high concentration of radiation is delivered to an intracranial target with high precision through the convergence of multiple lower-dosage beams (Lunsford & Sheehan, 2011; Ruzevick & Lim, 2013), limiting exposure and consequential damage to surrounding healthy tissues (Lim et al., 2013; Lunsford & Sheehan, 2011). For benign brain tumour, the objective of SRS is stabilisation in growth and/or gradual shrinkage of the tumour over time through inhibition of cell reproduction.

There are several platforms for SRS delivery, including Gamma Knife® (GKSRS), modified Linear accelerator (LINAC), and CyberKnife. GKSRS is considered the gold standard SRS system by many, largely because it has been the most extensively studied and used in clinical practice (Levivier et al., 2011; Stieber et al., 2003). GKSRS commonly involves attachment of a minimally-invasive, light-weight, rigid metal head frame to ensure that the patient remains immobilised throughout the procedure. More recently, a non-invasive custom-fitted mesh mask has been used for GKSRS (Vermeulen & Kim, 2014), which is usually the practice for CyberKnife and LINAC SRS also.

From a medical perspective, the clinical outcomes after SRS are generally positive and well researched. Overall, research has demonstrated that SRS yields excellent five-year tumour control rates which were comparable with total surgical resection, yet resulted in lower levels of treatment related morbidity, including reduced impacts on sensory function (Bloch et al., 2012; Maniakas & Saliba, 2012; Murphy et al., 2011; Vermeulen & Kim, 2014). However, as medical practice has shifted from a disease-centred to person-centred model, the individual’s experience has been increasingly recognised as an important endpoint when determining the effectiveness of an intervention (Epstein & Street, 2011; Tinetti et al., 2016; Van Der Eijk et al., 2013). Benign brain tumour and treatments may be associated with an array of symptoms and side-effects (Lemée et al., 2019), which can impact individuals’ quality of life (QoL) and functional status. As a non-invasive alternative to surgery GKSRS is expected to have fewer severe side-effects. Nonetheless, given that benign brain tumour is not usually life threatening, individuals are faced with the need to weigh up the potential benefits and negative impacts of treatment along with the timing (i.e., now vs. later) in terms of their QoL and survivorship.

In a broader clinical sample including individuals with benign brain tumour (n = 26, 55% of sample), George et al. (2002) identified that 82% experienced adverse symptoms within 24–48 h following their procedure, with 36% experiencing mild, 22% moderate, and 6% severe symptoms (requiring hospitalisation). Notably, this study did not assess pre-GKSRS functioning or conduct any longer-term follow-up regarding changes in symptoms or their impact on everyday living.

Symptom experience reflects more than the perception of frequency, intensity, and duration, but also the meaning the symptom holds for the individual. According to Armstrong (2003), one’s subjective interpretation may influence the occurrence of the symptom itself or the subsequent distress experienced. Therefore, open-ended questions regarding symptom experience and daily impact can yield important insights often overlooked when using symptom checklists or questionnaires. Focusing on patients’ experience of the GKSRS procedure, Clifford et al. (2009) conducted semi-structured interviews (n = 29) at three time points (following initial consultation; pre-GKSRS; and three months following GKSRS) with participants with mixed neurological conditions. Overall, participants were satisfied with the referral consultation processes, believed they received adequate information and had realistic expectations regarding the medical treatment outcomes. However, over half reported experiencing pain during frame placement and removal, and 36% felt inadequately prepared for this. Furthermore, 59% reported a temporary worsening of symptoms and mild-post treatment complications (e.g., headache or scalp pains lasting days to weeks). Although this study provided insight into participants’ experiences of the procedure, they did not investigate broader symptom experience and impact. Additionally, due to the lack of immediate post-GKSRS assessment, the accuracy of participants’ accounts of short-term effects were reliant on retrospective recall at threemonths.

Menkes et al. (2005) explored the impact of SRS (LINAC) on affective and cognitive functioning over three time-points (one day prior, one day following, and 10-week follow-up). Participants were aged 11–78 years and were receiving treatment for vascular conditions (arteriovenous malformation n = 9) and benign brain tumours (n = 3) that were considered life threatening. Participants’ early perceptions of treatment signified hope, symptom relief (e.g., better sleep, reduction in headache severity, and improvement in paralysed limbs), and continuation of life, anticipating the treatment to be a turning point for returning to normality. Perceptions after treatment and at 10-week follow-up reflected a gradual return to normality, characterised by diverse side-effects (headaches, tiredness, weakness, coordination difficulties, bruising, swelling and pin-site numbness). Limitations of this study include the mixed aetiology and small sample size. Notably, given the previous research indicating that patients’ symptoms evolve within 24–48 h post-SRS (George et al., 2002), a one-day follow-up may have been insufficient to gauge short-term effects following SRS.

Overall, previous studies highlight that individuals were generally satisfied with the referral and treatment processes of SRS (Clifford et al., 2009). However, the majority experienced new or increased symptomology post-SRS (Clifford et al., 2009; George et al., 2002), felt inadequately prepared for pain associated with frame placement (Clifford et al., 2009), and found that return to normality took longer than expected (Menkes et al., 2005). To guide patient education and support programmes, further research is needed to explore patients’ expectations of GKSRS, symptom experience, and the impact on everyday life both in the short-term and longer-term post-treatment.

Accordingly, the present study aimed to prospectively investigate individuals’ health and well-being and experience of symptoms and their impact on daily life in the context of GKSRS. Specifically, the main research questions were: 1) How do individuals perceive their health and well-being prior to, shortly afterwards and at long-term follow-up from GKSRS? an 2)) What symptoms do they experience and how do these impact on everyday life?

Methods

Design

Semi-structured interviews were conducted at three time-points: 1 week prior to GKSRS, two weeks post GKSRS, and at 3 months follow-up. Thematic analysis was utilized to explore patients’ perceptions of their well-being in the context of GKSRS for benign brain tumour. Thematic analysis can provide a rich and in-depth account of how individuals make sense of and find meaning in their experiences in the context of illness (Braun & Clarke, 2006, p. 2013). Manuscript preparation was guided by the Consolidated Criteria for reporting qualitative research (Tong et al., 2007). Research has indicated that data sufficiency is most typically reached by 12 interviews (Guest et al., 2006); however, given the longitudinal nature of this study and possible attrition, recruitment of 20 participants was planned.

Participants & setting

A convenience sample of participants were recruited from the Princess Alexandra Hospital GKSRS Clinic over an 18-month period during 2020–2021, it was not possible to approach all patients on a consecutive basis due to the impacts of COVID-19 on usual hospital procedures and staffing. In this setting, patients are fitted with either a frame or a mask for immobilization during the GKSRS procedure. Frame attachment is performed on the day of GKSRS by a neurosurgeon. The patient is awake (some choose to take oral sedation) and receives subcutaneous injections of local anaesthetic into the scalp, at the four sites where pins anchor the frame to the skull. Masks are constructed prior to the day of GKSRS. The patient lies in supine position and a warmed sheet of thermoplastic is stretched over their head and face. The mask cools and hardens, creating a custom-made device that is tight-fitting but non-invasive. The GKSRS clinical nurse consultation offers in-person education to patients prior to these procedures, supplemented by written information, and access to a purpose-made video.

Following ethical clearance, patients were screened for eligibility by a Clinical Nurse Coordinator based on the following inclusion criteria: 1) were scheduled for GKSRS for benign brain tumour, 2) demonstrated sufficient cognitive capacity, and 3) had proficient English language skills to provide consent and participate in an interview. Individuals with other neurological disorders or those experiencing acute and severe psychological distress were excluded. Prospective participants who agreed to be contacted were approached by the researcher via telephone.

Of those who agreed to be contacted (n = 34) when approached by the Clinical Nurse Coordinator, 20 provided informed consent and completed assessments over the telephone. Reasons for non-participation (n = 14) in the study were: inability to contact (n = 8), declined participation (n = 5 due to time constraints). One further individual displayed severe psychological distress and was deemed to be at acute risk, and therefore a mental health intervention was prioritised and the treating team was notified for appropriate management. A comparison of available demographic and clinical characteristics of the participants (n = 20) and non-participants (n = 14) indicated no significant differences in terms of age t = 2.96, p = .10, gender X² = .03, p = .87, tumour type X² = 2.79, p = .59, or years since diagnosis t = −1.31, p = .21. The demographic and health characteristics for the 20 participants are summarised in Table 1. Participants were aged 24–71 years (M = 47.65, SD = 14.95) and 65% were female. The most common tumour types were meningioma (40%) and acoustic neuroma (40%). Most participants were fitted with a frame (85%) for immobilization during GKSRS, all participants received a single dose of treatment. Individual-level characteristics are not reported to preserve participants’ anonymity in the context of recruitment from a single treatment site. Of the 20 participants who completed the first interview (Time 1), all 20 completed the second interview at short-term follow-up (T2), whereas two did not complete the three months follow-up interview (Time 3). Reasons included unable to contact (n = 1) and family health issues (n = 1).

Table 1. Demographic and health characteristics.

Variable	M(SD), n(%)	Range
Gender
Male	8 (35%)
Female	12 (65%)
Age (years)	47.65 (14.95)	24–71
Relationship Status
Single	3 (15%)
Married	14 (70%)
Defacto	3 (15%)
Employment Status
Not employed	25%
Retired	15%
Part-time work	10%
Full-time work	40%
Self-employed	10%
Tumour Type
Meningioma (WHO grade I or I and II)	8 (40%)
Acoustic neuroma	8 (40%)
Pituitary adenoma	3 (15%)
Trigeminal schwannoma	1 (5%)
Immobilisation during GKSRS
Frame	17 (85%)
Mask	3 (15%)
Procedure-related Medication
Dexamethasone use (reported at T2)	11 (55%)
Tumour Status		0–9
Years since diagnosis	2.4 (2.6)
Prior treatment
Surgical resection or debulking	9 (45%)

Data collection/procedure

Interviews were conducted by a Clinical Psychology PhD Candidate (CN) with an honours degree in Psychological Science. She had completed honours research on subjective cognitive impairment after brain tumour and worked as a research assistant interviewing individuals with acquired brain injury for two years. She received comprehensive training prior to and supervision throughout the interview process from an experienced clinical neuropsychologist and qualitative researcher (TO). Participants had no prior contact with or knowledge of the interviewer outside of this project. Duration of semi-structured interviews across all time-points ranged between 4’43” min and 26’26” min (T1 range = 6.54 ­– 26.26, M = 13.59; T2 range = 4.43–26.25, M = 11.11; T3 range = 5.19–22.29, M = 10.83).

Qualitative interview: The interview topic and question guide (see Appendix) consisted of four main questions and related prompts that explored participants’ current health status and symptom experience (physical, cognitive, and mental health), as well as impact on everyday life, in the context of GKSRS. The same interview guide was used at each time-point, with wording adjusted to reflect their treatment phase (i.e., upcoming, recent or previous procedure).

Data analysis and rigor

The interviews were recorded and transcribed verbatim. The analysis employed an inductive approach to identify relevant categories and themes within the data. Braun and Clarke’s six-phase thematic analysis (Braun & Clarke, 2006; Braun & Clarke, 2013; Byrne, 2022) was utilized, which involved an iterative process of: 1) gaining familiarity with the transcripts, 2) forming initial codes, 3) identifying categories and preliminary themes, 4) revising and refining codes and themes, 5) creating labels and definitions for themes, and 6) presenting themes with relevant examples and illustrative quotes. Three researchers (CN, TO and MH) discussed the initial three transcripts and developed a preliminary coding framework. Consensus coding of an additional three transcripts identified an overall agreement of 77% on category-level coding. Following further discussion to reach consensus on coding, the remaining transcripts were coded by the lead author with regular meetings with the research team to collaboratively reflect on interpretations and refine the themes. NVivo was used to facilitate coding and sorting of the data by code, category, theme, participant, and time. To further enhance credibility and trustworthiness, field notes and a reflexive log were kept and drawn upon throughout the analysis (Braun & Clarke, 2006).

Results

The initial coding phase resulted in 14 categories. Of these, 9 were determined to be distinct and most pertinent to understanding individuals’ perceptions of their health and well-being and the impact of symptoms on everyday life in the context of GKSRS. Analysis of the 9 main categories, through the thematic coding process, revealed three overarching and interrelated themes. The first theme, “Understanding my Illness and Treatment”, reflected efforts to make sense of one’s illness to reduce ambiguity and increase sense of control. The second theme, “Experiencing Gamma Knife”, represented participants’ experiences associated with the procedure, its outcomes and life impacts. The Third theme, “Adjusting One’s Mindset and Coping”, reflected participants’ process of adjustment over time. A summary of the themes, categories, descriptors and illustrative quotes is provided in Table 2.

Table 2. Summary of themes, sub-themes, code/descriptors and illustrative quotes.

Themes	Sub-themes	Descriptors	Illustrative quotes
Theme 1: Understanding my illness and treatment	Confusion around symptoms Connecting and relating symptoms	Unexplained symptoms Uncertainty or confusion regarding changes in body, emotions, and mind Symptom and tumour location related Symptoms exacerbated by stress Procedure and medication related side-effects	“I have felt like a weird brain fog this year and bits of last year. I just felt I wasn’t as sharp thinking, I felt like something in me wasn’t right, I couldn’t put my finger on it.” [P006 T1] “I’m not sure why my hearing might be compromised. I don’t know if it’s compromised” [P015 T3] “And I have slight double vision but um … my brain has learnt, I only notice that when I think about it now, so my brain has learnt to adapt to that as well and that is actually connected to the tip of the facial nerve that’s numb.” [P005 T1] “Just before I go to sleep laying down at night, you know, laying down on the back of my skull and I’ll get a sensation like a ring around connecting the four points. So, I don’t know if is like a PTSD or you know like a memory type thing or experience.” [P006 T2]
Theme 2: Experiencing Gamma Knife	Unexpected versus expected Outcomes and side effects Daily impacts Emotional response to treatment and outcomes	Unexpected side-effects experienced Some expected side-effects not experienced Expected to bounce back more quickly Improvements and deterioration in function (e.g., headache and skull pain, vision, hearing, balance, sleep, cognition, energy and sleep) Reduced ability to engage in normal activities Inability to leave the house Increased dependence Inability to work Increased productivity at work Increased independence Fear regarding side-effect Distress related to ongoing side-effects and outcomes Loss of confidence Happier	“I think I was prepared for kind of … I’d have the procedure and I’d be back at work in maybe a week, maybe two … When you know 3 months after and I’m still here.” [P001 T3] “Overall … I had anticipated lots of headaches, I haven’t had those. Occasional ones, I did not anticipate the high level of, or the level of nausea, and I was quite sick.” [P004 T2] “I actually find that I can concentrate better now. I was finding myself a little bit frazzled between tasks and I found at work I was starting to feel a little bit overloaded and I couldn’t multitask, but that is all starting to come really good now as well” [P021 T3] “A week and two days since the procedure and I have suffered what I would call significant vertigo for several days” [P004 T2] “I’m still suffering some balance issues which come and go. I might have two or three days, feeling a little bit uncomfortable” [P004 T3] “Oh, it has had an impact. I’m tired and cranky and frustrated, which then goes into work stresses and with the kids, and they cop it a little bit sometimes” [P021 T2] “I have a lot more energy, which is good. I’m able to do more with the kids and I’m not just tired all the time and can’t spend time with them and things like that. So, I’ve been able to get out and do more with them” [P021 T3] “So, I am pretty much house bound at the moment, only because my hearing has pretty much not been settled down since I had the Gamma. It’s really heightened hearing” [P001 T3] “I was very panicky, so I was very on edge about going to bed, I didn’t sleep very well because I was on steroids but also, I was also panicking that I would wake up in the morning and have paralysed nerve based on that” [P005 T2] “I do find that my brain tends to be anxious, for example I might just start looping and obsessing over what’s the radiation going to have impacted me long term.” [P005 T3] “So, I seem normal, healthy, happy and if you saw me in a bar, you see a positive person that’s in a good mood.” [P019 T3]
Theme 3: Adjusting mindset and coping	Mindset and appraisals Behavioural coping mechanisms Accessing support systems	Diverse outlooks and appraisals reflecting: Growth and gratitude Hope and optimism Acceptance and perseverance Resistance and despair Medication to manage symptoms/side-effects Relaxation techniques Memory aids Withdrawal/avoidance Planning/organisation Physical exercise “feel good” activities Prayer Family Friends Psychologist Emotional support Financial support Assistance with workload	“I don’t want to be doing that. I’m 3X years old, I mean I shouldn’t be frigging having to sleep in the day … I just want to be normal, I want to do what everyone else does” [P015 T1] “There is a pretty good light at the end of the tunnel” [P004 T2] “I usually cope all right with my emotions because I take three anti-depressants at night” [P010 T2] “With the fatigue, I do structure my days so that they’re not too full on generally speaking, so I’m not racing around doing too many things. I’ll only do two things on one day and stuff like that” [P015 T2] “Like I must admit I panic sometimes or overthink things, quite often the girls will say to me ‘mum, don’t overthink it, just let it happen’. So that was good, that sort of helped me a bit.” [P002 T3] “I’ve got my granddaughter who lives at home - she’s really good to talk to” [P010 T1] “It’s just the bit of company I get affects me. Makes me feel good sometimes if I’ve got someone in the house and that.” [P010 T3]

Theme 1: Understanding my illness and treatment

The first theme reflected participants’ ongoing efforts to make sense of their illness, symptoms, and treatment to reduce ambiguity and increase their sense of control. Sense-making was particularly evident shortly after GKSRS, when participants were experiencing diverse symptoms affecting different body systems. Participants’ accounts reflected varying degrees of understanding in relation to their illness and symptoms, from describing their condition as “weird” and “not being able to put a finger on it” (confusion around symptoms), to having a high level of understanding regarding specific brain regions and how they can influence their symptom experience (connecting and relating).

Confusion around symptoms

Many individuals struggled to make sense of changes in their body, emotions, and thought processes. This was evident through participants’ use of terms such as “weird”, “bizarre”, or “strange”. Confusion regarding symptoms appeared to relate to the cause of their tumour, how symptoms arose from the tumour location and symptom permanence. Prior to diagnosis, participants had attributed their symptoms to diverse potential causes, including stress, trauma, innate character traits, aging, or other concurrent conditions. For example:

“I would wake up every day with that hang over feeling that would last the majority of the day. I was that nauseous for the first year and a half that in the first 2 weeks I did a pregnancy test. I thought I was pregnant” [P001 T1]

Even after diagnosis and treatment, several participants continued to seek explanations for the cause of their tumour, which appeared to reflect efforts to influence their recovery and symptom experience.

“I definitely don’t feel like I’m a hypochondriac but I’m like why is this happening?” [P001 T3]

“I’m not sure on the recover path where I’m at and whether I should let the stress levels increase and I don’t know if stress contributed to getting the acoustic neuroma or saying like, don’t push too hard too quick” [P006 T3]

Participants also expressed uncertainty regarding whether symptoms were temporary or permanent, thus reflecting the “new normal”. For some, the possibility that symptoms would endure in the long-term led to feelings of anxiety.

“I certainly have woken up a couple times in the middle of the night, just a little … feeling because it’s playing on my mind and … feeling a bit anxious about it. You know whether or not this is as good as it’s gonna get” [P004 T2]

Similarly, for participants with sporadic or intermittent symptoms, there was concern regarding symptom recurrence: “I am always wondering when it (headaches and nausea) will come back or if it will come back. I think it is always on the back of my mind … because I’m like, why is it not there at the moment?” [P001 T1]

Connecting and relating symptoms

In contrast, other individuals had developed a coherent understanding early in their illness (i.e., prior to GKSRS) and were able to connect their symptoms, illness, and treatment. These participants described the relationship between tumour location and specific symptoms (e.g., reduced hearing from tumours involving the auditory nerves), exacerbated symptomology with increased tumour mass, tumour location and secondary conditions (i.e., acromegaly), and tumour-related hormone changes and outcomes. Despite not always having explanations for symptoms confirmed by treating professionals, sense-making enabled participants to make connections between their symptoms and possible causes:

“Seizures … when I lie in bed, it’s probably something to do with nerves or something, with my leg or my back or something, or all of it. Umm … not seizures, but I get like a … my body will just sort of jump!” [P003 T1]

For some individuals, their own accounts reduced ambiguity and, to some extent, increased perceived control over their symptoms.

“I have slight double vision but … I only notice that when I think about it now, so my brain has learnt to adapt to that as well and that is actually connected to the tip of the facial nerve that’s numb.” [P005 T1]

Changes in physical functioning were often related to treatment procedures or side-effects. In terms of GKSRS, participants attributed changes in their vision (e.g., blurriness), headaches, and pain on their skull (e.g., pin site pain and pressure) to the fixing of the metal frame and administration of radiation. For example, “For the first couple of days there was a little bit of blurriness, but I had swelling around both eyes. I assume that was associated with the fitting of the cage (frame)” [P004 T2]. Similarly, sleep changes were linked to dexamethasone use, as prescribed to reduce inflammation following GKSRS: “Experience in the last week has been difficulty sleeping, partly maybe from taking steroids as part of the reducing inflammation [P006 T2].

Participants also commonly made links between heightened stress levels and exacerbation of symptoms (including facial tingling, disorientation, and cognitive difficulties). Accordingly, a reduction in stress was perceived to alleviate symptoms: “I’m more relieved and therefore I think there’s less carrying of stress in the muscles, hence less headaches” [P019 T3]

Theme 2: Experiencing Gamma Knife

The second theme reflected participants’ experiences directly related to the GKSRS procedure; including expectations, outcomes and side-effects, emotional responses, and daily impacts.

Expected versus unexpected

Participants’ expectations of treatment-related outcomes prior to GKSRS often contrasted with their post-GKSRS reality. In some instances, participants reported functioning better than they had expected. For example, one participant was fearful of experiencing facial paralysis due to prior surgical side-effects and recounted her apprehension and subsequent relief after treatment.

“I have fear surrounding facial palsy, because I had that after my craniotomy, where I had full facial palsy post-op with that … I’m really scared that that’s going to happen again … ” [P005 T1]

“I didn’t sleep very well because A) I was on steroids but also, I was also panicking that I would wake up in the morning and have paralysed nerve … But each day it was fine, each morning it’s coped okay” [P005 T2]

However, more commonly, individuals reported experiencing unanticipated side-effects after GKSRS, which had unforeseen impacts on their ability to return to work, drive, and continue with normal everyday activities. For example, “The noise (increased sensitivity) has definitely made an impact, umm, just because it is something that I am definitely not used to. It’s kind of really shocked my system because I didn’t even think that would be a thing if that makes sense” [P001 T2].

The unexpected nature of some side-effects and feeling unprepared was still salient for this participant at threemonths follow-up;

It’s like with the whole hearing thing like we weren’t prepared for anything like that. Umm, we were obviously prepared for issues with my eyesight and whatever, but that has really just impacted so much … I don’t know, I feel like I shouldn’t be having these symptoms” [P001 T3].

Several participants reported discrepancies between their anticipated and actual timeframe for recovery or returning to normal activities after GKSRS, as follows:

“Yeah, the documentation that I received said that I resume normal duties the following day. There’s no way in the world I could have done the things that I like to do the following day” [P004 T2].

I’ve taken more time off work to heal. It was, I was expecting to bounce back a bit quicker and I think my body is telling me I needed more time to rest [P006 T2].

Outcomes and side effects

Participants described both changes and stability in their symptomology at short-term and longer-term time- points following GKSRS. While most participants’ initial symptomology remained stable, over one-third of participants reported improvements from pre-GKSRS symptomology in the domains of balance, hearing, sleep, cognition, productivity, headaches, or energy; most of which were maintained or further improved at three months follow-up. In contrast, approximately two-thirds of participants experienced onset of new symptoms or increased symptom severity soon after GKSRS. These side-effects were commonly in the domains of sensory and physical function and had generally subsided by 3-months follow-up. The most frequent side-effects shortly after GKSRS were nausea, headache, and balance problems and dizziness. Less commonly, participants experienced sleep disturbance, fatigue, cognitive difficulties, hearing difficulties, vision changes, and pin site complications.

Notably, nausea was commonly reported as a side-effect in the days following GKSRS, however had often dissipated by the T2 interview (∼ 2 weeks post-procedure) and was not reported by any participant at T3 (3-months post-procedure). Headaches and balance disturbance were also often reported at T2; however, all reports of these side-effects had dissipated by T3. Conversely, fatigue and sleep disturbance newly reported at T2 persisted at T3 for approximately 50% of participants. In terms of cognitive difficulties and balance disturbance/dizziness reported at T2, these were only experienced by one participant at T3. The most common issue attributed to GKSRS that persisted at T3 was hearing changes, including reduced hearing, increased tinnitus, increased sensitivity to loud noises, and “glue ear”. “The tinnitus is worse; I am hoping it’s not going to get much worse … cause it’s surprisingly worse … and it was increasing and it’s at its highest level now that it has been” [P006 T3]. No reports of GKSRS-related vision disturbance or pin-site complications were present at T3.

Daily impacts

Participants described both positive and negative daily impacts related to GKSRS and associated side-effects. For some participants, reductions in symptomology following treatment (i.e., decreased “mind fog”, “mental blocks,” and increased energy) led to increased capacity at work, confidence in social interactions, greater independence, and higher capacity to spend time with family. For one participant, their reduced symptomology was described as life-changing:

“I feel like I need to go and do something ASAP. I’m feeling like I need to start living again … This is a complete, new life-changing feeling. I just feel so good today” [P008 T2]

Yet, several participants described negative daily impacts, which ranged from mild, such as needing to reduce level of exercise or increased need to rest, to debilitating (e.g., inability to return to work or leave home).

“I normally like to do a fair bit of walking … brisk, brisk walking three, three or four times a week, about five k’s plus. I’ve done almost none of that for the last three months since the procedure. I haven’t felt well, I go on shorter walks, but I find myself doing a little bit of a … meander from side to side as I go, that makes me feel uncomfortable” [P004 T3]

Emotional response to treatment and outcomes

The experience of GKSRS and associated outcomes had emotional effects, with some participants describing their relief at how well the procedure went, whereas others described negative emotional responses of trauma and shock.

“I have been a little bit more emotional than normal, I guess you could say. I think with everything that’s been going on, with the actual Gamma Knife experience itself, was quite – I don’t like the word traumatic because it’s very dramatic – but it was quite a traumatic experience, having that frame screwed into my skull” [P021 T2]

Side-effects such as hearing difficulties, nausea, and loss of balance were reported to have elicited anxiety, agitation, low mood, and loss of confidence.

“Very anxious. Ah, even to the point of getting a bit distressed. … going back several days now of course. … roughly a week ago and last weekend and really worried that this was the new … that there was a new reality emerging from that” [P004 T2];

“I’m normally a cheerful person, positive. … and I’m finding myself at the moment being a little bit more on the darker side. Just feeling a bit despondent sometimes just thinking if this is the way it’s gonna be from now on” [P004 T3].

Conversely, some participants felt relieved after the procedure and believed this signified that their brain tumour journey was coming to an end. “Well, I’ve been a bit emotional - I’ve been crying a little bit lately. Even I don’t know why, but just because - I think it’s just because of the relief that it’s all bloody over and done with” [P012 T2].

Theme 3: Adjusting mindset and coping

This theme reflected participants’ process of adjustment or ways in which individuals had altered their expectations, approach to coping, lifestyle, and utilized their supports systems to adjust to the long-term effects of their illness and outcomes after GKSRS.

Mindset and appraisals

Participants’ mindset or broad outlook on their illness and life situation varied along a continuum, reflecting very positive appraisals (growth and gratitude), somewhat positive or neutral perspectives (hope, acceptance, and perseverance), and more negative appraisals (resistance and despair). For some individuals these mindsets appeared stable, whereas for others these fluctuated and became more positive over time.

Growth and Gratitude. Some participants expressed the belief that they or their life had been positively transformed by their illness. A sense of gratitude was often evident with participants’ accounts of feeling lucky compared to those with more life-threatening conditions or more serious symptoms, or recognising positive elements in their lives, and “no longer taking life for granted”. For some, a positive mindset was evident at all time points, for example:

“I am extremely lucky that it was a benign tumour because I know that my journey would have been very different if it had of been cancerous … I’ve got my life back so to speak” [P005 T1]; “I just laugh it off. I guess it was causing me anxiety, and now I don’t worry about it because in the grand scheme of things if that’s all the deficit I’ve got I’m pretty lucky” [P005 T3].

For other participants, their mindset and appraisals changed across the time-points, with typically more negative appraisals prior to GKSRS and post-GKSRS and more neutral or positive mindsets at three months following GKSRS. For example:

“I don’t like it … I’m worried when I’m going to stress that gives it umm you know, it’s growing” [P007 T1]; “I’ve been in Brisbane, relaxing in a nice hotel. I can’t complain, can I? I had good treatment, I had really good treatment. Just really good care at [hospital], and I think I feel relaxed that it’s all finished now” [P007 T2]; “I think I am pretty calm at the moment … positive about the future” [P007 T3].

Similarly, for P012 his mindset at T1 was negative and characterised by frustration; “I don’t want to f**king do it, so I’m not going to do it, I don’t feel like doing it, I’ve got a tumour in my brain. I don’t want to go anywhere” [P012 T1]. Conversely, at T2 his mindset had shifted to positivity and growth; “I think it’s slowed me up a bit. But it’s also giving me a different outlook on life … You know what I mean? It’s made life a bit nicer I think … my life’s just grooving” [P012 T2].

Hope and Optimism. For some participants, a sense of hope for recovery and improvement over time reflected their characteristic mindset; “I think it’s made my neck a little worse but it’ll settle down eventually … I think once my headaches resolve, I’ll be a lot better” [P019 T2]). Others expressed their desire to adopt a hopeful frame of mind, which required conscious redirection of their thoughts; “I get a bit emotional with some of the things I think about, and you sort of think, no no no, you’ve got things to do, things will improve, you’ve gotta be … gotta be hopeful and positive you know?” [P003 T2]).

While many participants expressed hope for improvement in symptoms and side-effects throughout their interviews, the focus of hope often changed over time. For example, P019 described his hope for future symptom improvement at T2, whereas by T3 his mindset reflected broader optimism for the future; as follows: “Wonderful, because I’ve got a little bit of a smile on my face at the moment … I feel capable of doing whatever I need to in the next phase of my life. Nothing’s worrying me at all. … The world is my oyster, I haven’t got any limitations” [P019 T3].

Acceptance and Perseverance. Participants who had expected GKSRS to resolve their symptoms but continued to have undesired effects typically reported their intention to “keep on going”, “suck it up”, “get on with it”, or “just move forward” with life. For example, one participant at T1 described feeling as though he was functioning at “50–60%” and “way below peak” but stated “I could live with this, it’s not that bad you know” [P006 T1]. Following his GKSRS treatment he expressed the need to accept the outcome and move forward; “I didn’t feel good straight after the operation, I felt very disoriented, uncomfortable … I mean there was nothing bad, nothing to whine about, just say suck it up” [P006 T2]. He maintained this mindset at 3-months following GKSRS; “I’m able to do things but I notice that I’m a little bit slower and a little bit more cautious in movements, but I’m trying to ignore all of that and just carry on with my life. So, my attitude to life is just push through” [P006 T3].

Resistance and despair. Less commonly, participants’ mindset reflected an ongoing struggle with their symptoms and negative daily impacts of the illness across all time-points. “I don’t want to be doing that. I’m 3X years old, I mean I shouldn’t be frigging having to sleep in the day” [P015 T1]; “It’s frustrating, it’s very frustrating but I don’t think I can do anything about it” [P015 T2]; “He gets annoyed because he thinks that I deliberately don’t listen to stuff that he says … I try to explain that I’ve got a brain thing but I don’t think he believes that … and so I think what’s next? … what’s the point?” [P015 T3].

Behavioural coping mechanisms

In addition to cognitive approaches to coping, participants employed diverse behavioural coping mechanisms to cope with symptoms including pharmacological intervention (e.g., sleep medication, pain medication, anti-depressants, medicinal cannabis), memory aids, physical exercise, relaxation techniques, and faith-based activities. Examples of proactive coping strategies included: “I’ve sort of looked into new relaxation techniques, breathing patterns have become really good. You know the breathe in for 3, breathe out for 6 … , it’s (anxiety) been going as quickly as it’s coming, which is really great for me” [P001 T2]; “I have to write them down in a diary. If I can’t get to my own diary in time, yeah, I don’t make those appointments” [P018 T2]; “I’ll do a daily goal, whether its gardening or trying something different in the kitchen, cooking, to sort of get out of the comfort zone” [P003 T3].

Other coping mechanisms involved seeking to reduce or avoid sources of stress by reducing stimulation (e.g., lights, noise) and activity levels; “The loud noises are irritating and I have preferred to be at home … I quickly lose patience with being in long meetings with people talking for no point, and I will avoid some places sometimes [P006 T1]. With the fatigue, I do structure my days so that they’re not too full on generally speaking” [P015 T2]; “If I’m at home and it starts raining I have to wear headphones to try and stop the noise” [P001 T3];

Accessing support systems

As a final major approach to coping with their illness, participants described accessing informal and formal support to enhance their physical and emotional well-being. Family and friendship networks were more frequently utilised than formal supports. Informal supports provided both emotional (e.g., listening to concerns, providing reassurance) and practical support and companionship. For example: “quite often the girls will say to me ‘mum, don’t’ overthink it, just let it happen’” [P002 T3]; “I do rely on my parents a lot, so everything I do I would now always discuss with my mother, for instance, appointments or things with my kids” [P018 T2]; “I make sure I’ve got supportive people around me” [P021 T3].

In terms of formal supports, some participants had found it beneficial engaging with a professional to support their emotional well-being. Four participants referred to seeing a psychologist to learn coping strategies to improve their adjustment. For example: “My emotional state wasn’t good two days ago, like I called the psychologist obviously and said like I’m struggling, I’m feeling really edgy and wired. I then had a session with him and I’m feeling a bit better” [P006 T2].

Discussion

Overall, the findings highlight that symptom experience, impacts and adjustment are highly individualistic in the context of GKSRS for benign brain tumour. Three themes broadly depicted participants’ ongoing efforts to make sense of their illness, symptoms, the effects of GKSRS and utilize cognitive and behavioural mechanisms to facilitate coping.

The first theme, Understanding My Illness and Treatment, reflected individuals’ attempts to make sense of their brain tumour and treatment-related side-effects to reduce ambiguity and increase perceived control over their illness and the daily impacts. Participants varied in their sense-making, with some able to explain their symptoms by connecting and relating these to the location of their tumour, treatment side-effects, and exacerbating or alleviating factors. Others struggled to account for their symptoms and expressed confusion at “weird” and “bizarre” effects, which were a source of anxiety. As individuals’ understanding of the causes and contributing factors improved over time, they were better able to anticipate and manage the impacts in daily life, thus improving sense of control. Ownsworth et al. (2011) similarly found that individuals’ sense-making appraisals differed across phases of the illness, with confusion about symptoms and prognosis (What’s happening here? What does this mean for me?) common early post-diagnosis, with a shift to focusing on the future in the longer-term post-treatment (What does the future hold for me?).

The integral role of sense-making appraisals is consistent with theoretical accounts of stress and coping in the context of illness. The Common-Sense Model of Regulation (Hagger & Orbell, 2021; Leventhal & Cleary, 1980) proposes that in order to cope with the threat to life and functioning posed by illness, individuals seek to establish lay accounts or interpretations of their illness, which support their use of coping mechanisms. Antonovsky (1996) proposed that illness challenges sense of coherence (SOC) or the extent to which people see the world as comprehensible, manageable, and meaningful. Those with greater SOC are more likely to perceive they understand what is happening to them (“comprehensibility”), believe they possess or can seek out the resources to cope (manageability), and are motivated to find meaning in their new life situation (meaningfulness) (Antonovsky, 1987). Strang and Strang (2001) identified that people with brain tumour who received detailed information about their illness were better able to understand their symptoms, although many still experienced unresolved existential issues.

The second theme, “Experiencing Gamma Knife”, provided novel insights regarding participants’ expectations, outcomes and side-effects, daily impacts, and emotional responses to this treatment. Overall, while some participants experienced amelioration of their brain tumour symptoms coupled with positive life impacts, side-effects and intensification of symptoms post-GKSRS were common and unexpected. Some negative effects were very short-term (e.g., nausea), whereas headaches, balance disturbance, dizziness, fatigue, cognitive difficulty, vision complications, and pin site irritations were still experienced by some participants at two-week post-GKRS. Hearing issues, fatigue and sleep disturbance that emerged post-GKSRS were the most common to persist at 3 months follow-up, albeit for only three participants.

These findings broadly reinforce prior research indicating that diverse short-term side effects are common and that a subgroup of individuals may experience persisting side-effects after GKSRS (Clifford et al., 2009; George et al., 2002; Menkes et al., 2005; Myrseth et al., 2005). Extending on previous studies, this study highlighted the impacts on activities and social roles (e.g., capacity to work or drive). Further, negative emotional reactions to GKSRS appeared to arise from a mismatch between individuals’ expectations and actual outcomes, with several participants expecting rapid recovery and the ability to resume usual activities soon after the procedure, but then experiencing unanticipated, intensified, or persisting symptoms. These findings have important implications for patient education and supportive care both prior to and following GKSRS in terms of preparing individuals for possible outcomes (e.g., symptoms and time course) and monitoring and managing impacts in daily life. Patients’ beliefs and expectations of treatment and recovery have been found to be key determinants of coping and illness outcomes (Hagger & Orbell, 2021).

The third theme of “Adjusting Mindset and Coping” highlighted the role of cognitive and behavioural strategies for managing the effects of the brain tumour and treatment. Illness appraisals and mindsets were found to vary between individuals and over time, with some having positive outlooks that endured whereas others recognised a need to be hopeful and strived to accept and persevere with their circumstances. Participants who recognized improvement in their symptoms or had learnt to cope with these, often adopted a more positive mindset at 3-month follow-up. Adjustment to symptoms was facilitated by diverse behavioural strategies including relaxation techniques, exercise, medication and memory aids, and drawing upon support from their social networks.

Together, these behavioural and cognitive mechanisms of adjustment reflect the “manageability” and “meaningfulness” component of SOC and are consistent with theoretical accounts of problem-focused, emotion-focused, and meaning-based coping (Carver et al., 1989; Folkman & Greer, 2000; Lazarus & Folkman, 1984). Participants’ primary appraisals or initial interpretations of their experience (e.g., diagnosis, symptoms, treatment, side-effects) stimulate secondary appraisals regarding the availability of personal and social resources for coping (e.g., adopting a positive mindset, using cognitive aids, accessing social support). Ownsworth et al. (2011) also found that individuals engaged in different sense-making processes throughout the illness, supported by interactions with health professionals and their personal support networks. Coping reactions ranged from efforts to maintain a sense of normality and downplay the threat through to changing their lifestyle to accommodate the impacts and finding meaning and purpose in their new life situation.

The current longitudinal research supports that individuals’ accounts of their illness can vary and change over time, and while some were able to connect and relate their symptoms and adopt a positive mindset from the outset, others took longer to make sense of, accept, and find meaning in their altered life situation. Illness cognitions have been found to mediate well-being outcome through influencing the types of coping strategies employed (Evers et al., 2001; Hagger & Orbell, 2021; Heijmans & de Ridder, 1998; Hudson et al., 2014). Individuals who perceive benefits of their illness or can derive positive meaning from their life situation typically have better QoL and psychological well-being than those who struggle to accept or feel helpless about their new reality (Hagger & Orbell, 2021; Ownsworth & Nash, 2015). Clinically, these findings highlight the importance of identifying individuals’ early illness appraisals and expectations of treatment and supporting the formation of a realistic and adaptive mindset.

Research in a chronic illness sample found that positive changes in illness perceptions after psychotherapy mediated the treatment effect on improved symptom severity and social adjustment (Chilcot & Moss-Morris, 2013). In the context of brain tumour, Ownsworth and Nash (2015) reported that appraisals regarding sense of control (i.e., manageability and self-efficacy) were more responsive to change following psychotherapy than threat appraisals. Therefore, although individuals’ prognosis and the functional consequences of the brain tumour and treatment sideeffects may not improve, understanding of the illness, perceived control over symptoms, and meaning derived from one’s experiences can be a focus for psychotherapy interventions. Preliminary evidence supports the efficacy of psychological interventions targeting SOC in the brain tumour population. Ownsworth et al. (2015) found that the 10-session Making Sense of Brain Tumour program was associated with a significant improvement in mood, existential well-being and QoL relative to usual care. Further research is needed to determine the efficacy of this program for supporting adjustment following GKSRS and determine whether any improvements in well-being are mediated by changes in illness cognitions.

Limitations

Various methodological issues may influence the interpretation and transferability of the findings. A convenience sample was recruited through a single treatment site during the COVID-19 pandemic. Due to COVID-19 and related hospital-based restrictions, usual clinic procedures and staffing were impacted, and it was not feasible to recruit patients on a consecutive basis. Additionally, we were not able to obtain information regarding patients who declined participation when approached by the Clinical Nurse Coordinator, and therefore cannot make inferences regarding the representativeness of the sample. Furthermore, many participants had experienced delays in scheduling their treatment which may have contributed to increased stress and anxiety around the time of the procedure. It is noteworthy that most participants’ treatment involved the fitting of a metal head frame (as opposed to mask), which was referred to frequently in their accounts. These sampling and contextual issues may affect the transferability of the findings to other clinical settings and the broader population of individuals receiving GKSRS for benign brain tumour.

Furthermore, due to the repeated interviews across three time-points (i.e., ∼ 60 interviews) it was not feasible to conduct member checking to verify the accuracy or completeness of the transcripts or the relevance of the themes to participants. The duration of interviews was relatively brief to avoid assessment burden in the context of a broader telephone-based survey lasting approximately 50–60 min. This approach was deemed suitable due to the focus on obtaining participants’ perspectives on their current physical and psychological state to prospectively capture changes in self-perceptions over time. It is possible that the quality of data obtained via telephone may differ from that obtained in person.

Clinical implications

Overall, this study advances our understanding of individuals’ experiences and the process of adjustment in the context of GKSRS for benign brain tumour, an area that has previously received little attention. The key clinical implications relate to the need for patient education to be delivered by treating teams in early stages of the assessment and treatment process to better prepare individuals for possible outcomes, including the likely time course of symptoms and impacts of GKSRS. Early access to this information may assist patients to form realistic expectations regarding symptom development and impacts on daily life and guide effective approaches to management. Furthermore, implementation of routine screening and monitoring of illness appraisals prior to and following treatment may help to identify patients at risk of poorer long-term psychological adjustment and guide the focus of psychological support.

Further research examining the prevalence of symptoms and treatment side-effects in the short term and longer -term following GKSRS with a larger and more representative sample is recommended. Accordingly, this research has been conducted as part of a broader project and a future quantitative study aims to examine the prevalence of symptoms over time and factors related to mood and quality of life after GKSRS. Other recommendations for future research relate to the development and evaluation of educational resources and supportive care interventions to promote individuals’ sense of coherence and well-being in the context of GKSRS for benign brain tumour.

Acknowledgements

We are grateful to the participants who contributed their time and shared their experiences. This study was supported by an Australian Government Research Training Program Scholarship awarded to Chelsea Nicol.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by an Australian Government Research Training Program (RTP) Scholarship.

Appendix

Semi-structured interview topic and question guide

1. Please tell me a little bit about your current health

2. Can you tell me about your physical health?

   1. E.g., hearing, vision, movement, strength, fatigue, sleep, seizures, nausea

   2. How have (summarised reported issues) impacted on your everyday life?

3. How would you describe your thinking skills and ability to communicate?

   1. E.g., memory, ability to plan, concentration, reading, following a conversation

   2. How have (summarised reported issues) impacted on your everyday life?

4. Please tell me about your emotional state or how you typically feel and cope with emotions?

   1. E.g., positive and negative emotions (e.g., happiness, feeling calm, sad, worried, frustrated), how you cope with negative emotions (e.g., talking to others, avoiding stress, etc)

   2. How have (summarised reported issues) impacted on your everyday life?