Patient-reported experiences on supportive care strategies following the introduction of the first Swedish national cancer strategy and in accordance with the new patient act

Abstract

Introduction: Several supportive care strategies are described in Swedish legislation and policy documents, such as the National Cancer Strategy and the Patient act. No previous systematic evaluation from a patient perspective has been performed. The aim of this study was to evaluate how these supportive care strategies are experienced by patients treated for cancer in the Stockholm-Gotland region.

Material and methods: In this cross-sectional study, we identified patients (diagnosed with gynaecological, haematological, upper gastrointestinal and head and neck cancer during 2014) from the Swedish Cancer Register. The European Organization of Research and Treatment of Cancer, EORTC, Quality of Life Questionnaires, QLQ-C30, Information QLQ-INFO25 and a study-specific questionnaire was used to collect data during follow-up after cancer treatment. We collected data on 869 cancer patients’ perception of availability and access to supportive care strategies and how they were experienced.

Results: Among the supportive care strategies suggested in the legislation and policy documents, just over half of the patients (n = 393, 53%) reported that they had access to a contact nurse, while 43% (n = 312) had received an individual written care plan and 16% (n= 137) had been referred to palliative care. Only 29% (n = 218) of the patients reported that they had received information about patient advocacy groups and 8% (n= 62) on medical second opinions from their cancer care team.

Discussion: The supportive care strategies suggested in Swedish legislation and policy documents may be useful but are only available for some patients. The implementation goals for the National Cancer Strategy and the Swedish Patient act have not been reached.

Introduction

In Sweden, the first National Cancer Strategy was introduced in 2009 [1] and includes the following goals; reducing the risk of developing cancer, improving the quality of cancer care, prolonging survival, improving health-related quality of life (HRQoL) and reducing both the regional differences and the differences in population groups for cancer care and outcomes. The strategy document includes several supportive care strategies to help reach the goals. Each of the six regions in Sweden since then have adapted the National Strategy into regional cancer plans.

The term Supportive care has been defined as ‘The prevention and management of the adverse effects of cancer and its treatment’ [2]. This includes the management of both physical and psychological symptoms and side effects across the continuum of the cancer pathway from diagnosis to post-treatment care, and end-of-life care.

One of the most important supportive care strategies is to offer each patient a contact nurse (CN) at the time of diagnosis [1]. This is a relatively new nursing role, mainly established within cancer care. The CN should have in-depth knowledge in cancer care, be a resource for education, information and support, while coordinating the clinical pathway for the patients and their families. Research has shown that similar nursing roles can reduce insecurity, vulnerability and even readmissions for cancer patients during their care journey [3].

Individually written care plans, IWCPs, are another type of supportive care strategy strongly recommended in many national cancer plans. The IWCPs includes contact information and appointments (for work-up, treatment and follow up). They also include individualized treatment and care-related information (including a plan for rehabilitation) and could be a vital tool for communication and coordination of the care. Even if there are some conflicting results from published research, an IWCP can improve the patients’ knowledge, thus reducing some of their insecurities [4–6].

The patients’ right to a second medical opinion (SMO) is increasingly being recognized. It reflects the drive for more a person focused care which is heralded in many national cancer strategies. Research has found that patients may seek a SMO for several different reasons, notably surrounding unsatisfactory communication and reassurance [7]. Evidence suggests that patients who actively partake in their care by exercising such rights and who have strong self-efficacy and confidence in self-management have fewer unmet needs [8]. It is stated in the Swedish Patient Act [9] that patients are entitled to a SMO and that the costs will be covered by the national health insurance.

Patient advocacy groups, PAGs, have a long history, fulfilling a vital role by providing support and information. Research has shown that membership or involvement with such services can improve both social and physical well-being [10] even if most patients are not actively involved. The Swedish National Cancer Strategy states that PAGs could contribute in policy decisions regarding cancer care [1] as well as educating and supporting the patients themselves [10].

Palliative care (PC) is aiming to increase quality of life for patients with life-threatening illness, alleviate symptoms, include the patient’s family in the care [11] and should be an important supportive care strategy during the whole cancer trajectory [12]. The Swedish Cancer Strategy highlights that the availability of PC needs to be improved both early in the cancer care trajectory and at end of life.

No formal evaluation of the first Swedish National Cancer Strategy has yet been performed. In this current study, we evaluate experiences of supportive care strategies among cancer patients in the Stockholm-Gotland region, Sweden.

Aim

The aim of study is to evaluate how supportive care strategies are experienced by patients treated for cancer in the Stockholm-Gotland region. The aim was also to explore factors that might impact the patients’ experiences.

Material and methods

Design

This cross-sectional study includes baseline data from a wider study evaluating the implementation of a new regional cancer nursing role, coordinating CNs, for patients with gynaecological, haematological, head and neck (H&N) and upper gastro-intestinal (GI) cancers.

In the current study, we analyzed data on patients’ perception of availability to supportive care strategies and how they were experienced, HRQoL and information needs. The study was approved by the Regional Ethical Review Board, Stockholm (Dnr 2016/5:4).

Participants

The Swedish Cancer Registry was cross-referenced with the National Population Registry to identify and select the participants. This cross-sectional sampling method minimized the risks of sending the questionnaires to deceased patients. The Swedish Cancer Registry includes 99% of all cancer cases that are clinically reported and morphologically verified [13]. All patients with gynaecological, haematological, H&N and upper GI cancer, diagnosed in 2014, living within the Stockholm Gotland area and ≥ 18 years were invited to participate in the study.

Data collection

Data were collected via three questionnaires in April–May 2015, ensuring that the participants would be in the follow-up phase, post-initial cancer treatment. The validated Swedish versions of the European Organization of Research and Treatment of Cancer [EORTC] Quality of Life Questionnaires, QLQ-C30, Information QLQ-INFO25 and a study-specific questionnaire (designed by the research team at the Regional Cancer Centre Stockholm Gotland) were distributed via regular mail.

A cover letter explaining the purpose of the research, patient confidentiality and that informed consent would be considered as the return of a completed questionnaire was included. A pre-stamped envelope for the completed questionnaires was also included. One written reminder was sent out 3 weeks following the initial postal date. The questionnaires could also be completed on-line via a secure internet link.

HRQoL

HRQoL was measured using EORTC QLQ-C30 (version 3.0). The instrument consists of 30 items, including five functional scales (physical, role, emotional, social and cognitive), three symptom scales (fatigue, pain, nausea and vomiting), six single items (additional common symptoms and financial implications of disease) and a global health status (quality of life) scale. A 4-point Likert scale ranging from 1 (not at all) to 4 (very much) is used to score each item, apart from two items pertaining to global health, which range from 1 (very poor) to 7 (excellent) [14].

Information needs

The patient’s perception of received information regarding treatment and care was measured by EORTC QLQ-INFO25. This validated instrument consists of four multi-item scales: information about the disease (four items), medical tests (three items), information about treatment (six items), other services (four items) and eight single item scales; care settings, self-help, written information, information on CD/tape, wish to receive more/less information and overall helpfulness of information. Out of the 25 items, 21 are completed by a 4-point Likert scale and four items require a yes/no response [15].

Study-specific questionnaire

The study-specific questionnaire (57 items) covered the following areas: demographics (eight items), investigation and cancer diagnosis (11 items), information exchange and patient participation (20 items), PC and care transitions (18 items). The questionnaire included 5-point Likert scales (very good, good, neither good or bad, bad and very bad), 4-point Likert scales (not at all, a little, a lot, very) and 3-point Likert scales (yes, no, don’t know) and demographic questions (such as age, educational status and type of treatment). In this study, we analyzed the demographic data plus seven other items concerning access to CN (two items), IWCP (two items), information from the cancer care team on SMO (one item), PAG (one item) and referral to PC (one item).

To assess and test the study-specific questionnaire for face validity, we asked six cancer patients (in different stages of disease and with a variety of cancer sites) to answer the questionnaire and to comment on the relevance and their understanding of the questions. Only minor issues were reported and were changed accordingly.

Statistical methods

Descriptive statistics were used to present patient characteristics (age, educational level, gender and type of treatment received), and scale scores in EORTC QLQ-C30 and EORTC QLQ-INFO25 [14,15]. Item scores of EORTC QLQ-C30 and EORTC QLQ-INFO25 were transformed to a 0–100 scale [16]. Scale scores were calculated, where higher scores represent higher functioning and global quality of life, as well as higher levels of information received, higher information wishes and higher satisfaction in EORTC QLQ-INFO25 [16]. However, higher scores in symptom scales represent more symptoms and a heavier symptom burden in EORTC QLQ-C30.

Proportions were calculated for the binary variables and for the continuous variables min, max, median, mean scores with standard deviations (Std) and percentile were used to describe the data. Cronbach’s alpha was used to assess internal consistency for all scales consisting of two or more items.

The scores of EORTC QLQ-C30 and EORTC QLQ-INFO25 were compared between the groups of patients reporting to have access to CN, IWCP, SMO and PAGs versus not having access. Responders and non-responders were compared regarding age, sex and cancer site. Exploratory p values were calculated for the comparisons where a Hazard Ratio test was used in the analysis of the binary variables, and for analysis of continuous variables (such as scores of EORTC QLQ-C30 and EORTC QLQ-INFO25) a Student’s t test or Wilcoxon test, where the null hypothesis was no difference between mean values for patients who reported. Alternative hypothesis was the difference between the groups. All statistical analyses were performed at 5% alpha risk or 95% confidence interval. All analyses were performed using the SAS (Statistical Analysis System) software (SAS Inc., Cary, NC).

Results

Patient characteristics

The results are based on data received from 869 (response rate 68%) cancer patients, of which 68% (n = 591) completed the survey on-line (Figure 1). The majority of the responders were women (n = 500, 57%). The mean age was 69 (min–max 24–100) and gynaecological and haematological cancers were the most frequently common cancer sites. We found no statistically significant differences in age or sex between responders and non-responders (Table 1). Patient characteristics are presented in Table 1. Most of the patients were born in Sweden (n = 653, 75%), retired (n = 565, 65%) and were cohabiting (n = 534, 61%). More than half of the patients (55%) reported that they had undergone single modality cancer treatment (Table 1).

Figure 1. The inclusion and exclusion of patients by diagnosis.

Table 1. Patient characteristics.

	n= (%)
	Responders	Non-responders	p value	Total n= (%)
Sex
Female	500 (57)	236 (57)	.35	736 (57)
Male	369 (43)	178 (43)	.00	547 (43)
Total	869 (100)	414 (100)	.01	1283 (100)
Age
Mean (min–max)	69 (24–100)	67 (18–99)
<50	62 (7)	58 (14)	.03	120 (10)
51–65	183 (21)	88 (21)	.36	271 (21)
65<	624 (72)	268 (65)	.08	892 (69)
Type of cancer
Gynaecology	256 (71)	104 (29)	.27	360 (28)
Haematology	241 (64)	137 (36)	.01	378 (29)
Head–neck	202 (70)	87 (30)	.57	289 (23)
Upper gastrointestinal	170 (66)	86 (34)	.67	256 (20)
Place of birth
Sweden	653 (75)
Abroad	133 (15)
Missing	83 (10)
Occupational status
Retired	565 (65)
Working	135 (15)
Sick leave	77 (9)
Maternity leave	2 (0,5)
Student	4 (0,5)
Missing	86 (10)
Education
High^a	263 (30)
Low	514 (59)
Missing	92 (11)
Living situation
Cohabitant	534 (61)
Living alone	248 (29)
Missing	87 (10)
Type of treatment
Single modality treatment	480 (55)
Multi-modality treatment^b	274 (32)
Operation	433
Radiotherapy	242
Chemotherapy	398
Other	95
Missing	115 (16)
Referral to palliative care	137 (16)
Missing	143 (16)
Total number of responders	869 (100)

^a University or equivalent.

^b Multiple choice question.

HRQoL

The EORTC QLQ-C30 data showed that global health and the five functional scales were reported relatively high. The highest scores were reported for cognitive functioning, (mean score 81), Table 2. The symptom with the highest reported score was fatigue (mean score 38). Nausea and vomiting were the symptoms reported with the lowest scores (mean score 9). The mean scores, expected scores [17] and spread of the scores in the symptom scales are shown in Table 2.

Table 2. Patient reported Health-Related Quality of Life (EORTC QLQ C-30) and perceived information needs (EORTC QLQ-INFO25).

EORTC QLQ-INFO25	Mean	Std dev	Cronbach’s alpha
Information about the disease	54.97	24.62	0.78
Information about medical tests	66.57	26.91	0.88
Information about treatments	53.94	25.85	0.86
Information about other services	30.03	27.25	0.78
Information about different places of care	28.63	34.67
Information about things you can do to help yourself get well	37.77	34.91
Written information?	51.46	50.01
Information on CD or tape/video?	0.68	8.25
Satisfaction with information received	66.35	29.79
Overall has the information been helpful?	65.93	27.45
Wish to receive more information?	29.89	45.81
Wish you had received less information?	1.26	11.17
Overall has the information been helpful?	65.93	27.45
Global score	54.66	12.69	0.92
			Cronbach’s mean score
EORTC QLQ-C30	Mean score	Std dev	Alpha	Expected^a
Global health status	66.15	24.53	0.89	61.3
Physical functioning	75.8	23.76	0.85	76.7
Role functioning	68.48	34.95	0.81	70.5
Emotional functioning	76.97	23.66	0.89	71.4
Cognitive functioning	81.4	22.3	0.64	82.6
Social functioning	75.13	27.8	0.8	75.0
Fatigue	38.32	28.53	0.88	34.6
Nausea and vomiting	9.05	17.98	0.72	9.1
Pain	24.38	28.81	0.89	27.0
Dyspnoea	30.79	30.97		21.0
Insomnia	28.26	31.07		28.9
Appetite loss	21.08	31.31		21.1
Constipation	17.03	27.07		17.5
Diarrhoea	13.69	24.57		9.0
Financial difficulties	12.44	26.16		16.3

^a Among cancer patients.

Information needs

The lowest levels of perceived information (EORTC QLQ-INFO25) were reported regarding ‘different places of care’ (mean score 29), ‘other services’ (mean score 30) and ‘things to do to help yourself get well’ (mean score 38). Data are presented in Table 2.

Contact Nurse (CN)

Just over half of the patients (n = 393, 53%) reported that they had access to a CN (Table 3a). Patients with gynaecological cancer reported the highest access (n = 140, 61%), while patients with haematological cancers reported the lowest access to CN (n = 75, 37%). Patients having undergone multimodal treatment reported significantly higher access (p < .0001) to CN compared with patients reporting single modality treatment (Table 3a). Among patients with access to a CN, 19% (n = 92) reported that they had contact with more than one CN (data not shown).

Table 3a. Comparison of patients reporting having or not having access to contact nurse (CN).

	n= (%)				Hazard 95% hazard ratio
	Yes	No	Total	Missing	confidence limits	p value
Total	393 (53)	355 (47)	748 (100)	121 (14)
Diagnosis					1.06 (0.86–1.29)	NS
Upper gastrointestinal	87 (55)	70 (46)	157 (100)		1.28 (1.06–1.55)	NS
Haematology	75 (37)	125 (63)	200 (100)		1 (Referent)
Gynaecology	140 (61)	89 (39)	229 (100)		1.05 (0.86–1.28)	NS
Head–neck cancer	91 (56)	71 (44)	162 (100)
Sex
Female	230 (54)	197 (46)	427 (100)		1.03 (0.89–1.192)	NS
Male	163 (51)	158 (49)	321 (100)		1 (Referent)
Age
18–50′	29 (49)	30 (51)	59 (100)		1.13 (0.84–1.52)	NS
51–65′	99 (61)	62 (39)	161(100)		1 (Referent)
+65	265 (50)	263 (50)	528 (100)		1.12 (0.94–1.33)	NS
Place of birth				5 (1)
Sweden	329 (53)	289 (47)	618 (100)		1 (Referent)
Abroad	61 (49)	64 (51)	125 (100)		1.05 (0.86–1.27)	NS
Occupational status				7 (1)
Working	72 (55)	60 (45)	132 (100)		0.96 (0.79–1.163)	NS
Sick leave	48 (65)	26 (35)	74 (100)		0.87 (0.68–1.11)	NS
Maternity leave	0 (0)	2 (100)	2 (0)		2.08 (0.52–8.32)	NS
Retired	268 (51)	262 (49)	530 (100)		1 (Referent)
Student	1 (33)	2 (67)	3 (100)		1.21 (0.39–3.78)	NS
Education				12 (2)
High^a	121 (48)	129 (52)	250 (100)		1 (Referent)
Low	268 (55)	218 (45)	486 (100)		1.071(0.92–1.25)	NS
Living situation				9 (1)
Living alone	110 (48)	117 (52)	227 (100)		1.06 (0.91–1.24)	NS
Cohabitant	278 (54)	234 (46)	512 (100)		1 (Referent)
Type of treatment				28 (4)
Multimodal treatment	195 (73)	73 (274)	268 (100)		1.36 (1.17–1.58)	<.0001
Single treatment	189 (42)	263 (58)	452 (100)		1 (Referent)
		Access to CN		No access to CN
QLQ-INFO25		Mean score	Std dev	Mean score	Std dev
Information about the disease		55.63	24.19	54.59	25.51	NS
Information about medical tests		67.02	25.60	66.44	28.19	NS
Information about the treatments		57.00	24.74	51.24	26.48	NS
Information about the other services		34.29	27.18	25.28	26.50	NS
Information about different places of care		32.78	35.84	23.61	32.39	NS
Information about things you can do to help yourself get well		44.32	34.86	30.98	33.62	NS
Written information		57.53	49.50	44.72	49.80	NS
Information on CD tape/video		0.80	8.90	0.62	7.84	NS
Satisfaction with the information received		69.24	28.88	63.25	30.78	NS
Wish to receive more information		28.96	45.42	31.63	46.58	NS
Wish you have received less information		0.54	7.31	2.22	14.76	<.0001
Overall the information has been helpful		70.44	24.70	61.18	29.54	.0009
Global score		55.22	11.85	54.25	12.95	NS

^a University or equivalent.

Table 3b. Comparison of patients reporting received or not received an Individual Written Care Plan (IWCP).

	n= (%)					Hazard 95% hazard ratio
	Yes		No	Total	Missing	confidence limits	p value
Total	312 (43)			728 (100)	141 (16)
Diagnosis
Upper gastrointestinal	51 (33)		102 (67)	153 (100)		1.25 (1.01–1.57)	NS
Haematology	74 (38)		120 (62)	194 (100)		1.19 (0.97–1.47)	NS
Gynaecology	96 (44)		123 (56)	219 (100)		1.12 (0.92–1.38)	NS
Head–neck cancer	91 (56)		71 (44)	162 (100)		1 (Referent)
Sex
Female	172 (42)		242 (58)	414 (100)		1 (Referent)	NS
Male	140 (45)		174 (55)	314 (100)		1.03 (0.89–1.194)	NS
Age
18–50’	26 (45)		32 (55)	58 (100)		1.045 (0.77–1.41)	NS
51–65’	79 (49)		81 (51)	160 (100)		1 (Referent)
+65	207 (41)		303 (59)	510 (100)		1.09 (0.91–1.30)	NS
Place of birth					5 (1)
Sweden	240 (40)		362 (60)	602 (100)		1 (Referent)
Abroad	68 (56)		53 (44)	121 (100)		1.17 (0.96–1.42)	NS
Occupational status					7 (1)
Working	60 (47)		68 (54)	128 (100)		1.02 (0.77–1.36)	NS
Sick leave	36 (49)		37 (51)	73 (100)		1 (Referent)
Maternity leave	1 (50)		1 (50)	2 (100)		0.99 (0.24–4.05)	NS
Retired	208 (40)		306 (60)	514 (100)		1.09 (0.85–1.39)	NS
Student	1 (25)		3 (75)	4 (100)		1.30 (0.47–3.55)	NS
Education					13 (2)
High^a	100 (41)		143 (59)	243 (100)		1 (Referent)
Low	208 (44)		266 (56)	474 (100)		1.03 (0.88–1.20)	NS
Living situation					8 (1)
Living alone	90 (42)		126 (58)	216 (100)		1 (Referent)
Cohabitant	217 (43)		287 (57)	504 (100)		1.01 (0.87–1.19)	NS
Type of treatment					26 (3)
Multimodal treatment	156 (61)		99 (39)	255 (100)		1.32 (1.13–1.54)	.0005
Single treatment	149 (33)		299 (67)	448 (100)		1 (Referent)
			Received an IWCP		Not received an IWCP
QLQ-INFO25			Mean	Std dev	Mean	Std dev
Information about the disease			59.98	23.75	51.59	24.71	NS
Information about medical tests			70.79	26.00	64.01	26.82	NS
Information about the treatments			60.80	23.47	49.36	26.45	NS
Information about the other services			37.29	28.12	24.83	25.35	NS
Information about different places of care			37.86	37.70	22.55	30.67	.0002
Information about things you can do to help yourself get well			48.44	34.90	30.60	33.04	NS
Written information			73.92	26.99	60.66	30.74	NS
Information on CD tape/video			73.31	23.87	61.03	28.92	.0005
Satisfaction with the information received			65.99	47.46	40.82	49.21	NS
Wish to receive more information			1.01	10.02	0.51	7.10	<.0001
Wish you have received less information			26.03	43.95	32.80	47.01	NS
Overall the information has been helpful			0.34	5.81	2.10	14.36	<.0001
Global score			56.93	11.72	53.20	12.63	NS

^a University or equivalent.

Table 3c. Comparison of patients reporting having or not having information of Second Medical Opinion (SMO).

	n= (%)				Hazard 95% hazard ratio
	Yes	No	Total	Missing	confidence limits	p value
Total	62 (8)	688 (92)	750 (100)	119 (14)
Diagnosis
Upper gastrointestinal	12 (8)	146 (92)	158 (100)		1.04 (0.84–1.30)	NS
Haematology	20 (10)	181 (90)	201 (100)		1.02 (0.83–1.25)	NS
Gynaecology	11 (5)	216 (95)	227 (100)		1.07 (0.875–1.31)	NS
Head–neck cancer	19 (12)	145 (88)	164 (100)		1 (Referent)
Sex
Female	26 (6)	406 (47)	431 (100)		1 (Referent)
Male	36 (11)	283 (33)	319 (100)		1.05 (0.91–1.22)	NS
Age
18–50′	9 (15)	52 (85)	61 (100)		1 (Referent)
51–65′	19 (12)	144 (88)	163 (100)		1.03 (0.77–1.38)	NS
+65	34 (6)	492 (94)	526 (100)		1.09 (0.83–1.42)	NS
Place of birth				5 (1)
Sweden	46 (7.43)	573 (92.57)	619 (100)		1 (Referent)
Abroad	15 (12)	110 (88)	125 (100)		1.05 (0.86–1.27)	NS
Occupational status				7 (1)
Working	15 (11)	117 (89)	132 (100)		1.38 (0.34–5.56)	NS
Sick leave	8 (11)	68 (89)	76 (100)		1.44 (0.36–5.79)	NS
Maternity leave	1 (50)	1 (50)	2 (100)		1 (Referent)
Retired	35 (7)	493 (93)	528 (100)		1.44 (0.40–5.79)	NS
Student	0 (0)	4 (100)	4 (100)		1.55 (0.28–8.46)	NS
Education				11 (2)
High^a	21 (8)	235 (92)	256 (100)		1 (Referent)
Low	41 (9)	440 (91)	481 (100)		1.003 (0.86–1.17)	NS
Living situation				8 (1)
Living alone	15 (7)	212 (93)	227 (100)		1 (Referent)
Cohabitant	45 (9)	469 (91)	514 (100)		1.022 (0.87–1.20)	NS
Type of treatment				25 (3)
Multimodal treatment	23 (9)	245 (91)	268 (100)		1.006 (0.87–1.17)	NS
Single treatment	36 (8)	416 (92)	452 (100)		1 (Referent)
		Had information about SMO		Had not information about SMO
QLQ-INFO25		Mean score	Std dev	Mean score	Std dev
Information about the disease		63.98	23.41	54.06	54.06	NS
Information about medical tests		74.23	25.42	65.80	65.80	NS
Information about the treatments		59.63	24.71	53.25	53.25	NS
Information about the other services		39.87	30.98	29.01	29.01	NS
Information about different places of care		37.93	37.18	27.79	27.79	NS
Information about things you can do to help yourself get well		48.33	34.40	36.74	36.74	NS
Written information		69.35	32.11	65.64	65.64	NS
Information on CD tape/video		73.45	28.89	65.17	65.17	NS
Satisfaction with the information received		56.45	49.99	51.01	51.01	NS
Wish to receive more information		0.00	0.00	0.77	0.77	<.0001
Wish you have received less information		30.65	46.48	30.48	30.48	NS
Overall the information has been helpful		1.67	12.91	1.25	1.25	NS
Global Score		58.18	12.52	54.25	54.25	NS

^a University or equivalent.

Table 3d. Comparison of patients reporting having or not having information of Patient Advocacy Groups (PAGs).

	n= (%)				Hazard 95% hazard ratio
	Yes	No	Total	Missing	confidence limits	p value
Total	218 (29)	533 (71)	751	118 (14)
Diagnosis
Upper gastrointestinal	30 (19)	126 (81)	156		1.16 (0.94–1.43)	NS
Haematology	69 (34)	136 (66)	205		1 (Referent)
Gynaecology	75 (33)	152 (67)	227		1.00 (0.83–1.22)	NS
Head–neck cancer	44 (27)	119 (73)	163		1.07 (0.87–1.31)	NS
Sex
Female	135 (31)	295 (69)	430		1.06 (1.058–0.92)	NS
Male	83 (26)	238 (74)	321		1 (Referent)
Age
18–50’	22 (37)	38 (63)	60		1 (Referent)
51–65’	58 (36)	102 (63)	160		1.00 (0.75–1.35)	NS
+65	138 (26)	393 (74)	531		1.11 (0.85–1.45)	NS
Place of birth				6 (1)
Sweden	180 (29)	441 (71)	621		1 (Referent)
Abroad	37 (30)	87 (70)	124		1.01 (0.83–1.22)	NS
Occupational status				8 (1)
Working	49 (38)	81 (62)	130		1 (Referent)
Sick leave	22 (30)	51 (70)	73		1.08 (0.81–1.43)	NS
Maternity leave	0 (0)	2 (100)	2		1.54 (0.38–6.21)	NS
Retired	143 (27)	391 (73)	534		1.11 (0.92–1.35)	NS
Student	1 (25)	3 (75)	4		1.13 (0.42–3.06)	NS
Education				13 (2)
High^a	82 (32)	175 (68)	257		1.04 (0.89–1.21)	NS
Low	136 (28)	345 (72)	481		1 (Referent)
Living situation				9 (1)
Living alone	50 (22)	175 (78)	225		1.11 (0.95–1.30)	NS
Cohabitant	167 (32.30)	350 (67.70)	517		1 (Referent)
Type of treatment				30 (4)
Multimodal treatment	113 (43)	152 (57)	265		1.23 (1.06–1.43)	.0081
Single treatment	100 (22)	356 (78)	456		1 (Referent)
		Had information about PAGs		Had not information about PAGs
QLQ-INFO25		Mean score	Std dev	Mean score	Std dev
Information about the disease		63.06	22.50	52.00	24.56	NS
Information about medical tests		74.87	23.23	63.68	27.30	.0073
Information about the treatments		63.42	23.04	50.31	25.91	NS
Information about the other services		43.46	27.12	24.67	25.35	NS
Information about different places of care		40.40	37.33	23.67	32.30	NS
Information about things you can do to help yourself get well		55.01	32.00	30.56	33.50	NS
Written information		76.81	24.56	62.09	30.62	.0003
Information on CD tape/video		77.62	22.63	61.39	27.88	.0005
Satisfaction with the information received		71.50	45.25	43.20	49.59	NS
Wish to receive more information		0.48	6.92	0.79	8.87	<.0001
Wish you have received less information		21.95	41.49	33.47	47.24	NS
Overall the information has been helpful		0.48	6.92	1.64	12.70	<.0001
Global score		59.19	11.60	52.98	12.04	NS

^a University or equivalent.

When comparing, patients reporting having or not having a CN, we found no statistically significant differences regarding demographic factors such as gender, age, place of birth, education level, occupational status or living situation (Table 3a).

Having a CN did not seem to affect the perception of received information (EORTC QLQ-INFO25) except for the fact that those reported having a CN were more likely to report that the overall information they received were helpful (p = .0009), Table 3d.

Approximately 10% (n = 86) reported that they did not have access to a CN, but would have needed this contact. A total of 176 (20%) of the patients reported that they did not need a CN (Table 4). Among these patients, 135 (77%) reported that they had undergone single modality treatment. Seventy-four patients (9%) also reported that they had a non-CN as main contact person.

Table 4. Patient reported access to a contact nurse (CN).

Did you have access to a CN?	Yes	No, but I had other contacts	No, I had no needn= (%)	No, and I would have needed this contact		Missing	Total
	384 (44)	74 (9)	176 (20)	86 (10)		149 (17)	869 (100)
Cancer treatment
Multi-modality	195 (51)	13 (18)	41 (23)	19 (22)
Single modality	189 (49)	61 (82)	135 (77)	67 (78)

Individual written care plan (IWCP)

Less than half of the patients (n = 312, 43%) reported that they had received an IWCP (Table 3b). Access to IWCP varied between the patient groups, whereas 56% (n = 91) of the patients with H&N cancer and 33% (n = 51) among the upper GI patients reported having access to IWCP. Patients reporting having undergone multimodality treatment were also more likely to receive an IWCP (p = .0005), Table 3b.

Patients receiving an IWCP reported significantly higher (EORTC QLQ-INFO25) satisfaction with the information overall (p = <.0001) and information regarding ‘different places of care’ (item 48) (p = .0002), Table 3c.

Second Medical Opinion (SMO)

Most of the patients reported not having received information about SMO from their cancer care team. A range from 5% (n = 11, patients with gynaecological cancer) to 12% (n = 19, patients with H&N cancer) reported that they were offered a SMO by their health care team (Table 3c). No significantly differences were found in information on SMO for any of the different patient groups regarding age, gender, diagnosis, living situation, education level, occupational status, place of birth or type of treatment (Table 3c).

Patient advocacy groups (PAGs)

Only 29% (n = 218) of the patients reported that they had received information about PAGs from their cancer care team. We found differences between the patient groups, whereas 19% (n = 30) of the patients with upper GI cancer and 34% (n = 69) of the patients with haematological malignance’s reported having received information on PAGs (Table 3d). Significantly more patients with multimodal treatment (43%, n = 113, p = .0081) reported that they had received the information compared with patient that underwent single modality treatment. A small proportion of patients (n = 61, 11%) reported that they found information on PAGs themselves rather than receiving the information from the cancer care team (data not shown).

Patients that received information about PAGs reported significantly higher satisfaction with the following EORTC QLQ-INFO25 items compared with those without information about PAG; the written information (p = .0003), if received information was helpful (p = <.0001), and information about the medical tests (p = .0073), Table 3d.

Palliative Care (PC)

Only 16% (n = 137) of the patients reported having been referred to PC (Table 1). We found no statistically significant differences in access to PC between patients who underwent single- or multimodality treatment (data not shown).

Discussion

This study evaluates cancer patient’s experiences of supportive care strategies, all described as important resources in Swedish policy and legislation documents, such as the National Cancer Strategy [1] and the Patient Act [9]. Only half of the patients reported having a CN and IWCP. Even fewer reported having information about SMO and PAG, or being refereed to PC. This shows that the implementation of the goals of the first Swedish National Cancer Strategy have not yet been reached within these patient groups. We can only speculate on the reasons as to the disconnect between the policy goals and the realities of the patients’ experiences.

Swedish cancer PAGs have repeatedly highlighted the importance of having access to a CN and have even stated that this is the most important supportive care strategy. As previously mentioned, the Swedish CN role is relatively new and the national role description was developed as late as 2011 [18]. Many of the CNs have described in an earlier report [19] a heavy workload and conflict between CN-related assignments with other clinical tasks. Several local and regional evaluations of the CN role have been performed but few included patient-reported data. However, Larsson and Bjuresäter [20] found in their qualitative report among Swedish cancer patients, a variation in the CNs’ performances, with differences in the compliance to the role description. The authors conclude that the CNs’ level of compliance has a great impact on the patients’ experiences, with more positive experiences if the CNs’ have a more autonomous role (as according to the national role description). An earlier report indicated similar results [21]. A possible explanation to the relatively low access to a CN in this current study could be that some patients might not recognize that they have been offered this service (if this nurse has had a more passive role). This explanation is supported by Larsson and Bjuresäter [20]. We have no information on how the CNs in this study complied with the role description, but this could explain the fact that the patients with CNs did not report more benefits with this service.

We have no robust information on the educational level of the CNs’ in this study. From the initiation of the role in 2009, tailored educational programs have been available, but not mandatory. The content of these education programs has changed over the years. As of 2012 the course curriculum is based on the national role description. These factors may also impact the performance of the CNs’. Comparisons with other studies are difficult as these types of nursing roles differ between countries. However, in line with our results, research has shown that a nursing navigation program, similar to the CN role, did not impact patients’ quality of life but did increase patient satisfaction of coordination of care, emotional support and personalized care [21].

The fact that patients with multimodal cancer treatment had better access to a CN is not surprising. These patients have often complex and longer clinical pathways with more frequent interactions with the cancer care teams. We can also assume that, if priorities had to be made, patients undergoing multimodal treatment probably had far more complex care needs. However, patients with multimodal treatment did not receive PC to any greater extent, compared to patients with single modality treatment. Another interesting finding in this study was that 20% of the patients reported that they did not need a CN. Most of these patients had undergone single modality treatment which may explain fewer symptoms and, therefore, a lesser need of support.

Less than half (43%) of the patients in this study reported that they had access to an IWCP. A recent national patient surveys shows that only one in five patients reported being offered an IWCP [22]. These are all worrying findings, especially since the patients in our study receiving an IWCP reported significantly higher satisfaction with the overall information. However, previous research shows conflicting results. Brennan et al. [5] failed to show benefits in satisfaction with available information among cancer patients receiving survivorship plans, while Blinder et al. [4] reported positive effects on care coordination and patient satisfaction for patients receiving a survivorship plan.

As well as access to a CN, patients with multimodal treatment were more likely to have an IWCP. There are obvious benefits with IWCPs for patients and their families. They may also be valuable, as they can provide staff in different clinical settings with a better understanding of the proposed treatment pathway and thereby potentially reducing the risk of medical errors [23]. So why does not a larger proportion of patients receive an IWCP? We can only speculate but this is in line with previous results by Brennan et al. [5] and factors such as time constrains, double documentation, unclear responsibilities between units/teams/professional groups may well impact.

Very few patients in this study were informed by their cancer care team about their legal right to a SMO. We found no demographic or treatment-related factors that impacted access to this information. Zysman et al. [24] and Shumeli et al. [25] found that women more often sought and obtained a SMO. Zysman et al. also found that lung cancer patients with higher socio-economic status more often requested SMOs compared with patients with a lower socio-economic status.

One of the most useful supportive care resources in our study was access to a PAG. This might reflect the recent development of a regional PAG, where all the organizations within the Stockholm Gotland region are represented. This group works together with professional experts within the regional cancer centre in various cancer-related issues.

Among the strengths of this large population-based study, are not only the use of patient reported data and validated instruments but also the relatively high response rate. However, our study only includes certain groups of cancer patients while other larger groups, such as breast, lung or prostate cancer were not included. It is possible that the results might have been different if other patient groups were included, but given that all cancer patients in the region are treated at the same health care organizations, major differences are not likely. Another weakness may be the variation in time since the patients underwent treatment, where as some patients had finished their cancer treatment only a few months, while others had finished over a year ago. This variation may have impacted the patients-reported experiences.

There is always a risk of selection bias in this type of research. In this study, we did not analyse register data on tumour stage. The reason being that different staging methods between the recruited patient groups. There is, therefore, a risk that is more patients with advanced stage disease among the non-responders. This may also have impacted the results and explain why relatively few patients were referred to PC. The non-responders were also younger, which also may impact the results. However, it is a known fact that younger cancer patients tend to respond to this type of surveys less often [26]. Another issue which type of studies is language barriers. Even if we distributed the questionnaires to all patients in cohorts, they were only available in Swedish, excluding non-Swedish speaking patients.

Conclusions

Supportive care strategies suggested in policy and legislation documents, such as the Swedish National Care Strategy and the Patient Act may be useful but not available for all patients. Access to resources such as CN, IWCP, PC and information provision on SMO and PAGs needs to be improved, as shown by the situation in the Stockholm-Gotland region.

Disclosure statement

No potential conflict of interest was reported by the authors.