Rehabilitation goals described by patients with rheumatic and musculoskeletal diseases: content and attainment during the first year after rehabilitation

Abstract

Purpose

We explored the content and attainment of rehabilitation goals the first year after rehabilitation among patients with rheumatic and musculoskeletal diseases.

Methods

Participants (n = 523) recorded goals in the Patient Specific Functional Scale at admission and reported goal attainment at admission, discharge, and 12 months after rehabilitation on an 11-point numeric rating scale. Goal content was linked to the ICF coding system and summarized as high, maintained, or no attainment. Changes in absolute scores were investigated using paired samples t-tests.

Results

Goals had high attainment with a significant positive change (–1.83 [95% CI −2.0, −1.65], p > 0.001) during rehabilitation, whereas goals had no attainment with a significant negative change (0.36 [0.14, 0.57], p > 0.001) between discharge and 12 months after rehabilitation. Goals focusing on everyday routines, physical health, pain management, and social or work participation were highly attained during rehabilitation. Goals that were difficult to enhance or maintain after rehabilitation addressed everyday routines, physical health, and work participation.

Conclusion

The positive changes in goal attainment largely occurred during rehabilitation, but they appeared more difficult to maintain at home. Therefore, rehabilitation goals should be reflected in the follow-up care planned at discharge.

Implications for rehabilitation

• The contents of rehabilitation goals reflect the complexity and wide range of challenges patients with rheumatic and musculoskeletal diseases experience.

• Positive changes in goal attainment largely occur during rehabilitation and appear to be more difficult to enhance or maintain at home.

• Rehabilitation interventions and follow-up care should be tailored to support patients in maintaining their attained goals for healthy self-management.

• Rehabilitation goals should be reflected in the follow-up care planned at discharge.

Keywords:

• Rheumatic and musculoskeletal diseases
• rehabilitation goals
• goal attainment
• international classification of function
• disability and health (ICF)
• Patient Specific Functional Scale (PSFS)

Introduction

Rheumatic and musculoskeletal diseases (RMDs) are a complex group of chronic disorders that substantially impact both individuals and society [1–3]. Earlier diagnosis and more effective pharmacological and surgical treatment have led to improved prognosis and better lives for patients with RMDs [4]. However, the effect of such treatment has been reported to be suboptimal [5,6] and successful management of these conditions also relies on multidisciplinary rehabilitation to maintain general health and cope with health changes inherent in living with a chronic condition [7–10]. Multidisciplinary rehabilitation aims at enabling patients to self-manage healthy behaviour [11–14], manage symptoms and treatment, and reach and maintain their optimal physical, psychological, and social functioning [15].

Rehabilitation goals are recognized as a core component of ensuring effective multidisciplinary rehabilitation [16–18] and contribute to patients’ healthy self-management. A study aiming to develop an indicator set to measure quality in RMD rehabilitation found goal-setting to be an appropriate indicator of rehabilitation quality on the structure level [19]. Such goals are considered essential for directing the rehabilitation focus and to drive the rehabilitation process forward, both during the rehabilitation stay and in the patients’ home and everyday life after discharge [20–23].

It is generally acknowledged that goals should be specific, measurable, achievable, realistic and relevant, and feasible within a time frame (SMART goals) [24,25]. Moreover, goals should refer to an intended future state of functioning, implying a change in behaviour and planned actions [23]. A recent study assembling theory and empirical evidence on goal-setting practices affirmed that goals also have to be meaningful and important to the patient [26]. There is growing evidence that rehabilitation is most effective when the goal-setting process is patient-centred [27,28] and when the patient is encouraged to communicate their needs and preferences [26,29,30]. Goals developed in a shared decision-making process between the patient and the health care professional are acknowledged to strengthen the patients’ confidence and sense of ownership, affecting the individual rehabilitation processes and enhancing the patients’ motivation for goal attainment [31–33]. Nonetheless, goal-setting practices differ, and little knowledge is available on how and whether patients with RMDs attain their rehabilitation goals over time after rehabilitation in specialized health care.

Therefore, the present study set out to explore the content of activity-related rehabilitation goals reported by patients with RMDs and the levels of goal attainment during the first year after rehabilitation in specialized health care.

Materials and methods

Study design and participants

The current study is nested within a large pragmatic multicentre cohort study in which the main aim was to explore continuity and quality in rehabilitation trajectories for patients with RMDs. Patients undergoing in-patient or out-patient rehabilitation were enrolled from five specialized rehabilitation institutions and four rheumatology hospital departments across Norway (all hereafter referred to as rehabilitation centres) and followed for 1 year after rehabilitation.

Participants were included in the study if they were ≥18 years old, proficient in spoken and written Norwegian, and admitted to rehabilitation in specialized health care due to inflammatory rheumatic diseases (spondyloarthritis [SpA], psoriatic arthritis [PsA], rheumatoid arthritis [RA]), osteoarthritis, chronic low back pain, chronic neck/shoulder pain, chronic widespread pain (fibromyalgia), osteoporosis, connective tissue diseases (systemic lupus erythematosus [SLE], myositis, etc.), or fractures or orthopaedic surgery that required rehabilitation. Participants also had to have acquired a Bank-ID that allowed secure login to a digital data reporting system containing patient-reported questionnaires. Participants were excluded if they had reduced cognitive function or severe mental illness.

Data collection

Data were collected between November 2015 and January 2017, and the 1-year follow-up period was completed by January 2018. Patient-reported data addressing health status and function, activity-related rehabilitation goals, and goal attainment were collected electronically at admission and discharge from rehabilitation, and 12 months after rehabilitation.

When reporting at admission and discharge, participants had access to personal guidance from health care professionals from the multidisciplinary rehabilitation team. One year after rehabilitation, participants received a text message and an e-mail with a link to the digital reporting system to complete the questionnaires. One reminder was sent after 1 week to those who did not respond.

Health status and function

Participants’ demographic characteristics (age, gender, body mass index, education level, and employment status), referral diagnoses, comorbidities, smoking status, and frequencies of physical and social activities were collected at admission to rehabilitation.

Activity-related rehabilitation goals

Up to five activity-related rehabilitation goals were described by each participant in collaboration with health care professionals from the multidisciplinary rehabilitation team during a goal-setting conversation at admission to rehabilitation and recorded in the Patient Specific Functional Scale (PSFS) [34]. The PSFS aims to detect activity limitations experienced by patients [34]; therefore, the goals in our study were activity related and reflect the importance of addressing such challenges. A validated translation of the PSFS is accessible in Norwegian and found to be reliable and responsive in patients with musculoskeletal disorders when tested in primary health care settings in Norway [35].

Goal attainment

Goal attainment was self-reported by participants at rehabilitation admission, discharge, and 12 months after rehabilitation on an 11-point numeric rating scale (NRS) in the PSFS. The scale ranged from 0 (no goal attainment) to 10 (full goal attainment). In addition, participants reported their motivation for attaining each goal at admission on an 11-point NRS ranging from 0 (no motivation) to 10 (fully motivated), which was calculated as a mean score of all goals for each participant.

Analyses

Drop-outs

Analysis on between group differences of the demographic baseline characteristics were performed for participants and non-participants at 12 months after rehabilitation.

Content of activity-related rehabilitation goals

The content of the self-reported activity-related rehabilitation goals were linked to the World Health Organization (WHO) International Classification of Function, Disability and Health (ICF) coding system [36]. The ICF Linking Rules from Cieza et al. [37–39], with refinements, were applied in the linking process as follows. All activity-related rehabilitation goals were assigned third-level ICF codes (three digits). The goals were then linked to one main ICF category and up to three additional categories to avoid skewed interpretation and loss of information when the goals were multicomponent. Thus, each goal could be linked to up to four ICF codes. The following additional linking rule was developed by the authors and applied to supplement the ICF linking rules: If a goal was complex with multiple components, the main ICF category was described within an activity and participation concept, reflecting clinical relevance and ensuring external validity.

Two researchers (HLV and MK) who are familiar with the ICF and the ICF Linking Rules, and have different health professional backgrounds (physiotherapist and occupational therapist, respectively), linked the first 50 registered activity-related rehabilitation goals to the ICF independently. They then compared and contrasted their linking and agreed on the most appropriate category when they linked differently. They had a linking agreement of 84% before reaching consensus on their differences. HLV linked the remaining goals to the ICF according to the agreed linking strategy.

Goal attainment

The absolute changes in scores from admission to discharge, from discharge to 12 months after rehabilitation, and from admission to 12 months after rehabilitation were calculated as the mean score of the one to five patient-reported activity-related rehabilitation goals combined. These changes were investigated using paired samples t-test. All statistical analyses were performed in IBM SPSS version 27.

To describe coded content within groups based on attainment of the activity-related rehabilitation goals, changes in goal attainment reported in the PSFS for each goal were calculated between admission and rehabilitation discharge, between discharge and 12 months after rehabilitation, and between admission and 12 months after rehabilitation. A 2-point change in the PSFS score was considered a clinically relevant difference [35]. Goals with a positive change ≥2 points were categorized as high attainment, goals with a positive change between 0 and 2 points as maintained attainment, and goals with a negative change as no attainment. Frequency counts were generated for the activity-related rehabilitation goal content and summarized within groups as high, maintained, and no attainment of the goals.

Ethics

All participants received oral and written information about the study prior to signing informed consent forms and underwent the rehabilitation they would have received regardless of participation in the study. Data were stored at the highest security level. The study was approved by the Norwegian Social Science Data Services, Oslo University Hospital (2015/16099). The ethical principles of the Helsinki Declaration and privacy requirements were followed.

Results

A total of 523 participants completed the assessments at baseline, 436 of whom (83%) completed discharge assessments and 354 (68%) the assessment 12 months after rehabilitation in specialized health care. Table 1 presents the participants’ baseline characteristics. The largest diagnostic groups were inflammatory rheumatic disease (SpA, PsA, RA; 50%) and chronic widespread pain (fibromyalgia; 29%). The majority of participants were women and middle-aged, and 46% were still working. In general, participants had high motivation to attain their activity-related rehabilitation goals at admission with a mean (SD) score of 7.9 (2.0).

Table 1. Baseline characteristics of 523 patients with rheumatic and musculoskeletal diseases undergoing rehabilitation in specialized health care.

Demographic and disease variables
Age, years	50.3 (11.3)
Gender, female	422 (80.7%)
Body mass index, kg/m^2	29.4 (8.7)
Comorbidity, yes	375 (71.7%)
Duration of disease, years	10.9 (11.7)
Education level >12 years	421 (80.5%)
Employed, yes/having a work relation	240 (45.9%)
Referral diagnosis
Inflammatory rheumatic disease (SpA, PsA, RA)	263 (50.3%)
Osteoarthritis	36 (6.9%)
Connective tissue disease	22 (4.2%)
Fracture with need for rehabilitation	2 (0.4%)
Chronic widespread pain (fibromyalgia)	152 (29.0%)
Chronic low back pain	34 (6.5%)
Chronic neck and shoulder pain	9 (1.7%)
Osteoporosis	2 (0.4%)
Postoperative rehabilitation	3 (0.6%)
Motivation for goal attainment*	7.9 (2.0)

Data are given as n (%) or mean (standard deviation). Missing data ranged from 0.0% to 9.4% (for body mass index only).

SpA: spondyloarthritis; PsA: psoriatic arthritis; RA: rheumatoid arthritis. *Patient specific functional scale. Numeric rating scale: motivation. 0–10, where 0 = no motivation.

Non-participants at 12 months after rehabilitation were significantly younger (p ≤ 0.001), were smoking (p = 0.003), had higher BMI (p = 0.03), shorter disease duration (p = 0.04), were less physically active (p = 0.02) and less social participating (p = 0.01), and they were significantly more often diagnosed with chronic widespread pain (fibromyalgia; p = 0.002), than participants reporting at 12 months after rehabilitation.

All 523 participants registered at least one activity-related rehabilitation goal at admission: 519 (99%) reported at least three goals, 323 (62%) reported four goals, and 210 (40%) five goals. A total of 2096 goals were identified at admission; 1766 (83%) goals were rescored at rehabilitation discharge and 1375 (66%) 12 months after rehabilitation.

Content of activity-related rehabilitation goals

Linked ICF codes

The 2096 activity-related rehabilitation goals identified at rehabilitation admission were linked to 2705 separate ICF codes, comprising 39 distinctive ICF categories. Thirteen categories were linked more frequently than the others and represented 2137 of the 2705 separate ICF codes (79%). These categories comprised the following ICF third-level categories: Doing Housework (d640; n = 312 ICF codes linked to this ICF category at admission, 14.9%), Sleep Functions (b134; n = 222, 10.6%), Looking After One’s Health (d570; n = 219, 10.4%), Informal Social Relationships (d750; n = 218, 10.4%), Remunerative Employment (d850; n = 181, 8.6%), Walking (d450; n = 150, 7.2%), Recreation and Leisure (d920; n = 150, 7.2%), Changing Basic Body Position (d410; n = 149, 7.1%), Moving Around (d455; n = 149, 7.1%), Family Relationships (d760; n = 109, 5.2%), Energy and Drive Functions (b130; n = 102, 4.9%), Carrying Out Daily Routine (d230; n = 95, 4.5%), and Sensory of Pain (b280; n = 81, 3.9%). Figure 1 presents the distribution of the 13 most frequent ICF categories in coded activity-related rehabilitation goals, and Table 2 presents detailed descriptions of the 13 ICF categories and activity-related rehabilitation goals with examples.

Figure 1. Distribution of the 13 most frequent third-level ICF categories in linked activity-related rehabilitation goals (n = 2137) reported in the Patient Specific Functional Scale by 523 patients with rheumatic and musculoskeletal diseases undergoing rehabilitation in specialized health care. The number above each bar is the number of goals.

Table 2. Content of the 13 most frequent third-level ICF categories in linked activity-related rehabilitation goals (n = 2137) reported in the patient specific functional scale by 523 patients with rheumatic and musculoskeletal diseases undergoing rehabilitation in specialized health care.

Examples of activity-related rehabilitation goals reported in the Patient Specific Functional Scale	ICF category	Number of linked activity-related rehabilitation goals	Name of the ICF category	Description of the ICF category
“Increase my energy level to participate in hobbies/social activities”, “Feel fully rested”	b130	102	Energy and drive functions (body functions – mental functions – global mental functions)	“General mental functions of physiological and psychological mechanisms that cause the individual to move towards satisfying specific needs and general goals in a persistent manner” [66]
“Get better sleeping routines and better sleep quality”, “Get more than 3 h of continuous sleep per night”, “Stop taking pills to be able to sleep”	b134	222	Sleep functions (body functions – mental functions – global mental functions)	“General mental functions of periodic, reversible, and selective physical and mental disengagement from one's immediate environment accompanied by characteristic physiological changes” [66]
“Experience less pain in my body”, “Be able to get dressed without pain”, “Can sit for a longer period without pain”	b280	81	Sensory of pain (body functions – sensory functions and pain – pain)	“Sensation of unpleasant feeling indicating potential or actual damage to some body structure” [66]
“Use a time table for my daily appointments”, “Plan my days the night before”, “Exercise three times a week”	d230	95	Carrying out daily routine (activities and participation – general tasks and demands)	“Carrying out simple or complex and coordinated actions in order to plan, manage, and complete the requirements of day-to-day procedures or duties, such as budgeting time and making plans for separate activities throughout the day” [66]
“Get up from the floor after playing with my grandchildren”, “Improve my mobility”	d410	149	Changing basic body position (activities and participation – mobility – changing and maintaining body position)	“Getting into and out of a body position and moving from one location to another, such as getting up out of a chair to lie down on a bed, and getting into and out of positions of kneeling or squatting” [66]
“Continue to be able to walk 400 meters to my cabin”, “Walk outdoors once a day”	d450	150	Walking (activities and participation – mobility – walking and moving)	“Moving along a surface on foot, step by step … such as when strolling, sauntering, walking forwards, backwards, or sideways” [66]
“Cycle 5 km to my work”, “Go swimming”, “Go dancing”	d455	149	Moving around (activities and participation – mobility – walking and moving)	“Moving the whole body from one place to another by means other than walking, such as climbing over a rock or running down a street, skipping, scampering, jumping, somersaulting, or running around obstacles” [66]
“Be able to keep up with my hiking companions”, “Lose 15 kg of weight in the coming year”, “Eat 3 main meals and two healthy snacks a day”, “Exercise at the gym”	d570	219	Looking after one’s health (maintaining diet and fitness and one’s health) (activities and participation – self-care)	“Ensuring physical comfort, health, and physical and mental well-being, such as by maintaining a balanced diet, and an appropriate level of physical activity…” [66]
“Clean my house once a week”, “Help out with the housework”, “Paint the house this summer”	d640	312	Doing housework (activities and participation – domestic life – household tasks)	“Managing a household by cleaning the house, washing clothes, using household appliances, storing food, and disposing of garbage, such as by sweeping, mopping, washing counters, walls and other surfaces; collecting and disposing of household garbage; tidying rooms, closets, and drawers; collecting, washing, drying, folding, and ironing clothes; cleaning footwear; using brooms, brushes, and vacuum cleaners; using washing machines, driers, and irons” [66]
“Be more social”, “Be social with friends 2 times per week”, “See my friends more often”, “Invite my friends to visit”	d750	218	Informal social relationships (activities and participation – interpersonal interactions and relationships)	“Entering into relationships with others, such as casual relationships with people living in the same community or residence, or with co-workers, students, playmates, or people with similar backgrounds or professions” [66]
“Be active with my children”, “Engage in being a good spouse”, “Attend family dinners on Sundays”, “Prioritize quality time with my family”	d760	109	Family relationships (activities and participation – interpersonal interactions and relationships)	“Creating and maintaining kinship relationships, such as with members of the nuclear family, extended family, foster and adopted family and step-relationships, more distant relationships such as second cousins, or legal guardians” [66]
“Be able to be at work three days a week”, “Be able to continue working”, “Clarify my work situation”	d850	181	Remunerative employment (activities and participation – major life areas – work and employment)	“Engaging in all aspects of work … for payment, as an employee, full or part time, or self-employed, such as seeking employment and getting a job, doing the required tasks of the job, attending work on time as required …” [66]
“Go to the … … concert with my friend”, “Play my guitar”, “Travel with my motorhome in the summer”, “Sing in the local choir”, “Go fishing again”	d920	150	Recreation and leisure (activities and participation – community, social, and civic life)	“Engaging in any form of play, recreational or leisure activity, such as informal or organized play and sports, programmes of physical fitness, relaxation, amusement or diversion, going to art galleries, museums, cinemas or theatres; engaging in crafts or hobbies, reading for enjoyment, playing musical instruments; sightseeing, tourism, and travelling for pleasure” [66]

Content descriptions

“Enhance physical health and general well-being” was a topic put forward in a large proportion of the activity-related rehabilitation goals (d410, d450, d455, and d570) and involved being able to move around, coordinate movements, and maintain an appropriate level of physical activity alongside pursuing a balanced and healthy diet, losing weight, avoiding smoking, and staying fit. Content addressing managing the household (d640) was the most frequently used single code and involved being able to do or spend time doing housework, such as cleaning the house, washing clothes, or other household chores. The goals focusing on managing symptoms related to RMDs (b130, b134, and b280) involved enhancing energy and motivation levels and optimizing rest and recovery, together with sleep and pain management. These goals were also frequently expressed as symptom management to further pursue daily activities and participation. Goals expressing wishes to manage everyday routines (d230) addressed content on carrying out daily routines, such as exercising four times a week, eating breakfast every day, or eating three main meals a day, along with using a time table for appointments or planning a schedule for the day. Goals addressing content related to social participation and leisure (d750 and d920) comprised wishes to be more social and meet up with friends in various settings, or wishes to attend recreational activities or organized activities, plays and sports, physical fitness programmes, going to cinemas, museums, or theatres, engaging in crafts and hobbies, or traveling for pleasure. The goals focusing on remunerative employment (d850) concerned different work relations and described employment participation and wishes to clarify and determine their future work load. The coded content in goals related to interactions and personal relationships with other people (d760) comprised wishes to engage in and prioritize activities with close family and to contribute to these important personal relationships.

Overall goal attainment

The mean score for goal attainment on the PSFS increased between baseline and discharge, but decreased between discharge and 12 months after rehabilitation (Figure 2). When looking at changes in the absolute scores, we found a significantly positive change in goal attainment from admission to discharge (change in score −1.83 [95% CI −2.0, −1.65], p > 0.001), but there was a significantly negative change in goal attainment between discharge and 12 months after rehabilitation (change in score 0.36 [95% CI 0.14, 0.57], p > 0.001). However, a significant positive change in goal attainment occurred over the total rehabilitation period from admission to 12 months after rehabilitation (change in score −1.41 [95% CI −1.61, −1.20], p > 0.001).

Figure 2. Median goal attainment scores of the one to five activity-related rehabilitation goals reported by patients with rheumatic and musculoskeletal diseases on an 11-point numeric rating scale at baseline (n = 2096 goals), discharge (n = 1766), and 12 months after rehabilitation (n = 1375) in specialized health care. The whiskers represent the smallest and largest number in the sets.

A total of 907 (51.4%) goals were categorized as high goal attainment at discharge from rehabilitation, whereas 620 (35.1%) and 239 (13.5%) were categorized as maintained attainment and no goal attainment, respectively. Two hundred and fifty-nine (21.2%) goals were above the cut-off for high attainment between discharge and 12 months after rehabilitation, 394 (32.2%) goals were maintained, and 570 (46.6%) goals had a negative change and considered in the no attainment group. Between baseline and 12 months after rehabilitation, 623 (45.3%) goals were in the high attainment group, 471 (34.3%) in the maintained attainment group, and 281 (20.4%) in the no attainment group (Figure 3).

Figure 3. Distribution of high, maintained, and no goal attainment in patients with rheumatic and musculoskeletal diseases (n = 523) between baseline and discharge, discharge and 12 months after rehabilitation, and between baseline and 12 months after rehabilitation. The number above each bar is the percentage of goals in each group of goal attainment. The y-coordinates represent percentages.

Content of goals with high, maintained, and no attainment

The distribution of the 13 most frequent ICF categories in coded activity-related rehabilitation goals based on attainment during the rehabilitation stay, after the rehabilitation stay, and from admission to 12 months after rehabilitation is presented in Figure 4. At discharge from rehabilitation, goals in managing everyday routines (d230) were the content with the highest frequency in the high attainment group. Moreover, goals with content on physical health and general well-being (d410, d450, d455, and d570), pain management (b280), enhancing energy and motivation levels (b130), informal social relationships (d750), work participation (d850), and leisure activities (d920) appeared most frequently in the high attainment group during rehabilitation. Managing housework (d640), interacting in personal relationships (d760), and sleep management (b134) appeared equally or close to equally as frequent in the high and maintained goal attainment groups during the rehabilitation stay.

Figure 4. Distribution of the 13 most frequent third-level ICF categories in linked activity-related rehabilitation goals reported in the Patient Specific Functional Scale among rheumatic and musculoskeletal disease patients (n = 523) undergoing rehabilitation in specialized health care. The patients were grouped as high, maintained, and no goal attainment for the rehabilitation stay, the follow-up period after rehabilitation, and the total rehabilitation period from admission to 12 months after rehabilitation. The y-coordinates represent percentages.

In the period between discharge and the 12-month follow-up, the majority of goals appeared most frequently in the no attainment group, especially content on managing everyday routines (d230), work participation (d850), enhancing energy and motivation levels (b130), and content on physical health and general well-being (d410, d450, d455, and d570). Goals in managing housework (d640) and social participation and leisure (d750 and d920) also had high frequencies of no attainment. Nonetheless, when looking at the rehabilitation period from admission to 1 year after rehabilitation as a whole, all goals were maintained or in the high attainment group.

Discussion

This study is one of a few to explore the content and goal attainment in activity-related rehabilitation goals among individuals with RMDs. To the best of our knowledge, this study is the first to explore levels of goal attainment during and after rehabilitation in specialized health care.

The results demonstrate that goals comprise a wide range of content addressing important parts of everyday life, such as general health and well-being, leisure activities, and social and work participation. Our findings show that positive changes in goal attainment largely occur during the rehabilitation stay, and it appears more difficult to enhance or maintain these positive changes after coming home. Nonetheless, when observing the rehabilitation period from admission to 1 year after rehabilitation as a whole, our results demonstrate a significant positive change in goal attainment with a higher frequency of goals with high attainment than goals with no attainment. During rehabilitation, goals focusing on everyday routines, enhancing physical health and general well-being, pain management, enhancing energy and motivation levels, or social or work participation appeared most frequently in the high attainment group. After rehabilitation, goals addressing the management of everyday routines, social and work participation, recreational and leisure activities, enhancing energy and motivation levels, and physical health and general well-being appeared most frequently in the no goal attainment group.

In line with previous research [40–42], our results show that rehabilitation goals comprise a broad spectrum of everyday activities and participation, extending from enhanced physical health and general well-being and symptom management to managing the household, leisure activities, social and work participation, and reinforcing family relationships. The wide range of content demonstrates the complexity and multicomponent challenges experienced by patients with RMDs, and indicates their concern with improving several aspects of their lives. Moreover, our results support previous research on content in in-patient RMD rehabilitation [7] in which the content focussed on physical activity and fitness in collaboration with the physiotherapist, attending pain management education classes, having a structured plan and time table for the rehabilitation stay, and spending time together and connecting with other people with similar challenges in diverse activities and settings. In our study, such goals showed high attainment during the rehabilitation stay, underlining that patients’ needs and preferences for a healthier life are mirrored in the rehabilitation interventions and targeted by health care professionals in current rehabilitation practice.

Enhanced physical health and general well-being were the goal contents most frequently described by patients in our study. This is consistent with other research, which has found that the most common long-term goal put forward by patients with RMDs participating in specialized rehabilitation concerns physical exercise aiming for the maintenance or improvement of physical fitness [41]. Patients with inflammatory rheumatic diseases have an increased risk of cardiovascular disease [43–46]. Therefore, interventions targeting physical activity and physical fitness are highly recommended [47–49] and, not surprisingly, are a part of the rehabilitation goals developed in collaboration with health care professionals. However, a challenge concerned with goals of pursuing regular fitness activities is the patient’s ability to manage this as a routine in a demanding everyday life at home. We found that both physical activity and managing routines were goals that were difficult to attain at home. A recent study in clinical epidemiology suggested that replacing sedentary time with light-intensity physical activity could have beneficial health effects [50]. From the perspective of public health, management plans could focus more on the importance of everyday activities to supplement going to the gym, and could include activities such as walking or biking to work, getting off the bus one stop before home, taking the stairs instead of the elevator, or doing work in and around the house.

Household management was the most frequently single ICF-code used to describe rehabilitation goals in our study. One reason for this may be the high proportion of females in our study, and that household traditionally has been the domain of women. However, gender equality has come a long way in Norway, with 66.3% of all women of working age being in paid employment in 2021 [51]. Correspondingly, men also increasingly take part in household chores. While time used on household management by women was five times that of men in 1970, it was reduced to twice as much in 2010 [52]. Thus, even if traditional roles may still play a part, the large proportion of goals related to household chores may also reflect that men increasingly take responsibility for such activities. This hypothesis is supported by results from a Norwegian rehabilitation study with 65% male participants, where household management was one of the most frequent cited important activity limitations [53].

Our results demonstrate that patient-reported rehabilitation goals are most frequently highly attained, with a significant positive change in goal attainment during the rehabilitation stay, whereas the majority of goals had a significant negative change after rehabilitation. These findings reflect the instant and direct effect of the rehabilitation interventions delivered during the rehabilitation stay, but also support previous research finding a declining effect of rehabilitation over time [7,53–56]. Research has shown that patients feel ill-prepared for managing activities in their everyday lives when discharged from rehabilitation [57]. A recent study addressing patients’ experiences with challenges to attaining their goals after discharge from rheumatology rehabilitation found time, additional health problems, changes in routines, and events outside of the plan to be areas that affected goal attainment [42]. A finite effect of a rehabilitation stay is not surprising, as patients are taken out of their demanding everyday context to attend systematized and individualized rehabilitation. Therefore, it is plausible that patients with chronic conditions are in need of repetitive rehabilitation stays in specialized health care. On the other hand, maintenance of goal attainment and behavioural changes may be enhanced by increasing the focus on the follow-up care patients receive in primary health care after rehabilitation. A recent study investigating quality indicators for RMD rehabilitation found a low pass-rate (22%) for the process indicator “External personnel were involved in planning follow-up”, and a pass-rate of 55% for the structure indicator of having a “Written individual plan for follow-up” [19], supporting suboptimal follow-up care in current rehabilitation practice. Although the current design of follow-up care interventions lacks consensus [58], results from one of our previous studies [59] indicate that discussing and planning follow-up care at discharge from rehabilitation is significantly associated with the follow-up care received; thus, plans for follow-up in primary health care should be an integral part of rehabilitation in specialized health care. The current study may add that the activity-related rehabilitation goals put forward should be reflected in the follow-up care planned at rehabilitation discharge, and that health care professionals should be specifically aware of offering support when the goals address physical activity, recreational and leisure activities, managing everyday routines, and social and work participation, as these goals are more difficult to attain or maintain after rehabilitation in specialized health care. Furthermore, studies on methods to improve patient maintenance of behavioural changes are warranted.

There is some evidence of a positive relationship between work and health status [60,61], and work participation was frequently addressed by the patients in our study. Recently, there has been an increased political focus on supporting people with chronic conditions in continuing or returning to work, and “Points to consider to support people with RMDs to participate in healthy and sustainable work” is currently being developed by the European Alliance of Associations for Rheumatology (EULAR), as a work participation gap remains when comparing patients with RMDs to the general population [62]. In Norway, political strategies state that all rehabilitation programmes in specialized health care should have a work-oriented focus, and a recent feasibility randomized controlled trial found that job retention-focussed vocational rehabilitation including work assessment, ergonomics, work modification, activity diaries, action planning, and arthritis self-management in the workplace is a credible and acceptable intervention for reducing work productivity loss, absenteeism, and perceived risk of job loss in patients with inflammatory rheumatic diseases [61]. Nonetheless, our results show that patients do not attain work-related goals after rehabilitation. This should encourage future research to explore implementation strategies for such interventions in RMD rehabilitation and encourage further improvement of clinical rehabilitation practices to support patients with RMDs in participating and remaining in healthy and sustainable paid work.

In our study, we used the ICF, as it is a well-known and validated framework tool for describing and comparing health information [39,63]. However, a potential weakness is that a large number of ICF categories initially described the content of our patients’ goals before they were delimited into the 13 most frequent ICF categories, which led to a description of only the largest trends. These limitations potentially address a weakness of the ICF coding system and a shortcoming of its validity in describing the content of complex rehabilitation. Another limitation of our study was that the participants did not have the opportunity to change their goals at rehabilitation discharge; thus, the patients’ progress and modification in needs and preferences towards goals in their home setting may have been lost. Future research on activity-related rehabilitation goals should allow a dynamic goal-setting process, with discussion and adjustment of the rehabilitation goals both before and after discharge from rehabilitation. Our results were based on the participants self-reported data; consequently, the results may have been affected by recall bias and peoples known tendency of overemphasizing normative behaviours, such as goal attainment [64,65]. The strengths of our study include the relatively large sample size and the inclusion of patients with a wide diversity of RMDs from rehabilitation centres in different geographical locations in Norway, which support the generalizability of our results.

In summary, our findings show that rehabilitation goals comprise a wide range of content reflecting the complexity of the challenges patients with RMDs experience. Regarding goal attainment, positive changes largely occur during the rehabilitation stay, and it appears to be more difficult to enhance or maintain positive changes after coming home. Therefore, rehabilitation interventions and follow-up care should be tailored to support the patients in maintaining their attained goals for healthy self-management, as these may improve health outcomes and prolong the effects of rehabilitation. Moreover, rehabilitation goals that are put forward should be reflected in the follow-up care planned at rehabilitation discharge.

Acknowledgements

All authors contributed to the analyses and interpretation of data. All authors contributed substantially to drafting the article or revising it critically.

Disclosure statement

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

Additional information

Funding

This multicentre cohort study was funded by The Dam Foundation [2018 FO188698]. No sponsors were involved in the study design, data collection, data analysis, data interpretation, or writing of the manuscript.