Abstract
Background
The number of cancer survivors is increasing, but their health care needs are often unmet. Increased involvement of primary care has been suggested to address this. Several barriers to satisfactory primary care contacts for cancer survivors have been identified but little studied in a Swedish context.
Aim
To explore barriers to satisfactory primary care contacts for Swedish cancer survivors, and factors associated with these barriers.
Method
In 2023, patients in southern Sweden diagnosed with colorectal, lung, breast, or prostate cancer 1–2 or 5–6 years ago were invited to complete a digital questionnaire. The questionnaire covered quality of life, health problems, health care needs, and health care contacts. Respondents also rated the extent to which they had experienced six types of barriers to satisfactory primary care contacts. Logistic regression models were fitted to explore the relationship between barriers and other questionnaire variables.
Results
A total of 8262 individuals were invited, and 2131 responded. Two-thirds (1429/2131; 67%) reported one or more barriers to satisfactory primary care contacts. Lack of staff continuity was most prevalent, with 48% (1031/2131) experiencing a barrier, followed by lack of access. Survivors with additional comorbidities, more cancer-related health problems, problem-induced primary care contacts, and those who lacked a regular primary care physician had higher odds of perceiving barriers than their counterparts. This also applied to participants who did not have an active handover compared to those still in treatment.
Conclusion
From the perspective of Swedish cancer survivors, improved relational continuity and access to primary care is needed.
Keywords: Cancer survivors, primary care, access to health care, patient satisfaction, surveys and questionnaires, Sweden
Background
An increasing proportion of the population live with or have survived cancer [1]. In 2020, there were 19 million new cases of cancer globally. In 2040, the global cancer incidence is estimated to reach 28 million cases [1]. With improved diagnostics, treatment and standards of living, more cancer patients live to become cancer survivors. In Sweden, the relative 5-year survival rate of all cancers combined has increased from around 40% in 1974–1978 to around 75% in 2019–2023 [2]. Most cancer survivors experience physical and psychological consequences of the cancer disease and its treatment in the short term and in the longer term [3–5]. Some of these consequences will result in an increased need for primary care [6]. However, previous international research has indicated that cancer survivors’ health care needs often are not fulfilled [3,7]. These unmet needs include physical as well as emotional and practical issues, in temporal proximity to the cancer diagnosis but also up to 10 years later [3,7].
Lack of cooperation between specialized cancer care and primary care has been pointed out as part of the problem in meeting cancer survivors’ needs, and increased involvement of primary care has been suggested [8,9]. Important barriers to integrated or shared cancer care have been identified in prior international studies [10–12]. These barriers center on communication between specialized cancer care and primary care, and on knowledge and training in primary care [10–12]. In Sweden, primary care is team-based and has an extensive mandate that includes managing acute and chronic conditions, general palliative care, rehabilitation, and prevention. At the same time, Swedish primary care receives a relatively low proportion of total health care spendings and has challenges regarding access and continuity [13–15]. Thus, it is reasonable to assume that internationally identified barriers to integrated cancer survivorship care will be at least as significant in a Swedish context. Nonetheless, to our knowledge, the role of primary care for Swedish cancer survivors has been insufficiently studied. In two prior qualitative studies, we therefore explored Swedish cancer survivors’ experience of primary care [16,17]. Several barriers to satisfactory primary care contacts were identified by the participants, including deficient coordination with specialized cancer care, lack of continuity, and low availability [16]. Similar barriers have to some extent been identified in other national contexts [8,12]. However, to our knowledge, no Swedish quantitative studies have been reported in this area.
More detailed understanding of barriers from the cancer survivors’ perspective may serve to improve primary care for this growing and potentially vulnerable patient group. Therefore, we set out to further explore barriers to satisfactory primary care contacts for Swedish cancer survivors, and cancer-related, health-related, and primary care-related factors associated with these barriers, through a survey study.
Method
Study design
This is a cross-sectional study using data from the Swedish Cancer Registry and data collected in a digital survey. The manuscript was prepared in adherence with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines [18].
Setting, participants, and data collection
Adult patients in the Swedish Southern Health Care Region (total population: 1.9 million) who were diagnosed with colorectal, lung, breast, or prostate cancer 1–2 years or 5–6 years prior to questionnaire distribution were identified via the Swedish Cancer Registry in 2023. All identified patients (n = 8262) were invited via postal mail to fill out a digital questionnaire using the Research Electronic Data Capture (REDCap) platform [19,20]. The questionnaire covered background factors, quality of life, health problems, health care needs, and health care contacts (Supplement 1). We included existing instruments in the form of the 19-item version of the Assessment of Rehabilitation Needs Checklist (ARNC), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) version 3, and one item on self-rated health from the 36-Item Short Form Health Survey (SF-36) as well as items based on our prior qualitative studies [16,17,21–25]. Patient representatives were consulted regarding content, relevance, and wording during the development, but no formal pilot testing was done.
Variables and statistical methods
This study describes and analyzes the questionnaire responses focusing on barriers to satisfactory primary care contacts. The questionnaire item regarding barriers (Supplement 1, item 31) was constructed based on our prior qualitative studies, and asks respondents to rate the extent to which they have experienced that six different circumstances have obstructed satisfactory primary care contacts since they were diagnosed with cancer (Figure 1) [16,17]. For analysis, ratings were dichotomized into the absence of a barrier (rating ‘not at all’ or ‘don’t know’) or the presence of a barrier (to any extent, i.e. rating ‘to a small extent’, ‘to a fairly great extent’, or ‘to a great extent’). This was done for each sub-item (each barrier), and also for all sub-items combined to obtain a measure of whether participants had perceived any barrier.
Figure 1.
Questionnaire item regarding barriers to satisfactory primary care contacts for cancer survivors. Italicized text in parentheses is used to refer to the item in-text and was not part of the questionnaire.
The following variables were analyzed regarding association with the perception of barriers to satisfactory primary care contacts, and the results were used to inform the selection of variables for further analysis (item numbers refer to the questionnaire, Supplement 1):
Background variables: Age (years), sex (man/woman), native language (Swedish/other). Education (item 5) was dichotomized into high school or lower (none, compulsory school, or senior high school) and post-high school.
Cancer-related variables: Time since diagnosis (1–2/5–6 years), type of cancer (prostate/breast/colorectal/lung).
Health-related variables: Self-rated health (item 10) was used as an overall measure of health (poor/fair/good/very good/excellent) and was also dichotomized into low (poor/fair) or high (good/very good/excellent). The EORTC QLQ-C30 physical function scale (score 0–100, calculated from 5 items) was used as a measure of overall physical function. Total number of cancer-related health problems reported in the ARNC (0–19) was included as a measure of needs, and was also divided according to distribution into approximate thirds of the sample (0–2/3–5/6+ problems).
Primary care-related variables: Number of additional comorbidities common to primary care (item 23) had a total of 11 options and answers were categorized as 0/1/2/3+ comorbidities. Primary care center operator (item 26) was dichotomized as public or private, and response ‘don’t know’ was excluded. Knowledge of a regular primary care physician (item 27) was dichotomized as yes or no (‘no’ or ‘don’t know’). For satisfaction with primary care contacts since cancer diagnosis (item 30), all ratings were used (very poorly/poorly/neutral/well/very well). Post-diagnosis cancer-related primary care contacts (item 22) were divided into three types depending on patient-reported reasons: routine only (for blood sampling or assistance with aids), problem-induced (for physical, psychological/social or other problems), or no cancer-related primary care contact. An active handover (item 28, opened if response: ‘no’ on item 14 regarding ongoing/planned cancer treatment) was defined as reporting of referral from specialized cancer care to primary care after conclusion of treatment and was dichotomized as yes or no (‘no’ or ‘don’t know’). For regression analysis, we constructed a variable to indicate care pathway position, categorizing participants in ongoing/planned cancer treatment (‘yes’ on item 14) as well as participants who had concluded their treatment (‘no’ on item 14). The latter group was further categorized depending on reporting of active handover (‘yes’, ‘no’, or ‘don’t know’ on item 28).
We performed a complete case analysis, however in the submitted questionnaires there was no missing data to address. Pearson’s chi-square test was used to analyze the association between categorical variables and ratings on barriers. As prerequisites for parametric analysis were not fulfilled, Kruskal Wallis test was used for continuous variables. Post-hoc tests were performed using the Bonferroni correction. Spearman’s rank-order correlation coefficient was calculated to measure the strength of association between ratings on barriers and on satisfaction with primary care contacts. Logistic regression models were fitted to further explore the relationship between the included variables and perceived barriers to satisfactory primary care contacts. The selection of variables was based on theoretical relevance and on the results of bivariate analyses. As a sensitivity analysis, we excluded the participants that rated ‘don’t know’ on each barrier in the logistic regression models.
Ethics
The project has been approved by the Swedish Ethical Review Authority (dnr 2022-05569-01) and a regional consent for the retrieval of patient register data (KVB 358-22). Participation was voluntary, and all participants consented to participate after receiving study information. Data was pseudonymized and handled in accordance with data security regulations.
Results
A total of 8262 individuals were invited, and 2131 responded resulting in a response rate of 26%. Background characteristics and response rates are presented in Table 1.
Table 1.
Background characteristics and response rates for our 2023 survey of Southern Swedish cancer survivors’ rehabilitation needs and health care contacts (N = 2131).
| Variable | Participants, n (%) | Response ratea, % |
|---|---|---|
| Sex | ||
| Women | 935 (44) | 25 |
| Men | 1196 (56) | 27 |
| Age (years) | ||
| 18–49 | 146 (7) | 34 |
| 50–59 | 327 (15) | 36 |
| 60–69 | 644 (30) | 33 |
| 70–79 | 817 (38) | 26 |
| ≥80 | 197 (9) | 12 |
| Time since diagnosis | ||
| 1–2 years | 1278 (60) | 27 |
| 5–6 years | 853 (40) | 24 |
| Type of cancer | ||
| Prostate | 906 (43) | 27 |
| Breast | 720 (34) | 27 |
| Colorectal | 405 (19) | 24 |
| Lung | 100 (5) | 17 |
| Native language Swedishb | 1997 (94) | |
| Post-high school educationb | 1101 (52) | |
| Total | 2131 (100) | 26 |
Out of 8262 individuals invited.
Response rate cannot be calculated as data were obtained from the questionnaire.
Participant ratings on barriers to satisfactory primary care contacts after cancer diagnosis are provided in Tables 2 and 3. Staff continuity had the highest proportion of participants perceiving this as a strong barrier (341/2131; 16%) and as a barrier to any extent (1031/2131; 48%).
Table 2.
Distribution of barriers to satisfactory primary care contacts perceived by Southern Swedish cancer survivors (N = 2131).
| Perceived barrier | To what extent? (n, %) |
||||
|---|---|---|---|---|---|
| Don’t know | Not at all | To a small extent | To a fairly great extent | To a great extent | |
| Organizational cooperation | 823 (38.6) | 691 (32.4) | 256 (12.0) | 158 (7.4) | 203 (9.5) |
| Access: get in touch | 223 (10.5) | 1068 (50.1) | 482 (22.6) | 205 (9.6) | 153 (7.2) |
| Access: book an appointment | 241 (11.3) | 1041 (48.9) | 442 (20.7) | 224 (10.5) | 183 (8.6) |
| Staff continuity | 247 (11.6) | 853 (40.0) | 418 (19.6) | 272 (12.8) | 341 (16.0) |
| Staff competence | 981 (46.0) | 765 (35.9) | 182 (8.5) | 107 (5.0) | 96 (4.5) |
| Staff interest | 819 (38.4) | 950 (44.6) | 158 (7.4) | 96 (4.5) | 108 (5.1) |
Table 3.
Distribution of barriers (dichotomized) to satisfactory primary care contacts perceived by Southern Swedish cancer survivors (N = 2131).
| Perceived barrier | To what extent? (n, %) |
|
|---|---|---|
| Absence of barriera | Presence of barrier to any extentb | |
| Organizational cooperation | 1514 (71.0) | 617 (29.0) |
| Access: get in touch | 1291 (60.6) | 840 (39.4) |
| Access: book an appointment | 1282 (60.2) | 849 (39.8) |
| Staff continuity | 1100 (51.6) | 1031 (48.4) |
| Staff competence | 1746 (81.9) | 385 (18.1) |
| Staff interest | 1769 (83.0) | 362 (17.0) |
Rating ‘don’t know’ or ‘not at all’.
Rating ‘to a small extent’, ‘to a fairly great extent’, or ‘to a great extent’.
Access, in terms of difficulty to get in touch and to book an appointment, appeared as the second largest barrier considering ratings to any extent. The two items on access had similar ratings with 39% (840/2131) and 40% (849/2131), respectively, perceiving a barrier to any extent. For the three remaining barriers (organizational cooperation, staff competence, and staff interest), a high proportion of participants rated ‘don’t know’ (38–46%) (Tables 2 and 3).
Figure 2 illustrates whether barriers were perceived regardless of type and extent. Most participants (1429/2131; 67%) experienced one or more barriers. It was more common to experience barriers in one to three areas than in four to six areas (Figure 2).
Figure 2.
Number of barriers to primary care contacts perceived by southern Swedish cancer survivors (N = 2131). Participants rated the degree to which each of six circumstances (organizational cooperation, access: get in touch, access: book an appointment, staff continuity, staff competence, and staff interest) had obstructed satisfactory primary care contacts. The figure visualizes how many barriers were perceived, regardless of extent.
The different barriers showed similar strengths of association with ratings on satisfaction with primary care contacts after cancer diagnosis (Table 4). Staff continuity showed the weakest association (ρ = 0.43, p < .001) while organizational cooperation showed the strongest association (ρ = 0.58, p < .001).
Table 4.
Strength of association between perceived barriers and satisfaction with primary care contacts for Southern Swedish cancer survivors (N = 2131).
| Perceived barriera | Satisfactionb |
|
|---|---|---|
| Spearman’s ρ | p-value | |
| Organizational cooperation (n = 1123) | 0.58 | <.001 |
| Access: get in touch (n = 1515) | 0.53 | <.001 |
| Access: book an appointment (n = 1506) | 0.52 | <.001 |
| Staff continuity (n = 1514) | 0.43 | <.001 |
| Staff competence (n = 1017) | 0.54 | <.001 |
| Staff interest (n = 1162) | 0.55 | <.001 |
Ratings coded for analysis: Not at all = 1, to a small extent = 2, to a fairly great extent = 3, to a great extent = 4. Response ‘don’t know’ was excluded from analysis.
Ratings coded for analysis: Very well = 1, well = 2, neutral = 3, poorly = 4, very poorly = 5. Response ‘don’t know’ was excluded from analysis.
The distribution of participant characteristics, and cancer-, health-, and primary care-related variables in relation to the perception of each barrier is detailed in Supplementary Tables 1-6. For a broader measure, we also included the presence of any barrier (Supplementary Table 7). The results of logistic regression analysis, using the presence or absence of the different barriers as the outcome, are shown in Table 5. Cancer survivors with a higher number of cancer-related health problems according to the ARNC (6+) perceived more barriers of all types than those with a lower number of problems (0–2). The association was most evident for organizational cooperation (OR 2.6, 95% CI 2.0–3.4). Participants with additional comorbidities (2+ vs 0) also experienced more barriers of all types. Further, those with problem-induced cancer-related primary care contacts reported more barriers than those with routine contacts only. The overall perception of barriers was also higher for cancer survivors who did not have an active handover from specialized cancer care to primary care compared to those still in cancer treatment. In addition, lacking a regular primary care physician was strongly associated with experiencing staff continuity as a barrier (OR 4.2, 95% CI 3.4–5.1), but also with perceptions of access (OR 2.0, 95% CI 1.7–2.4; OR 1.6, 95% CI 1.3–1.9). Finally, cancer survivors with low self-rated health, non-native Swedish speakers, and women appeared to perceive more barriers than their counterparts, while those with high school education or lower perceived less barriers than those with higher education, though associations were not as strong as for the other factors (Table 5).
Table 5.
Logistic regression modelsa of factors associated with the perception of barriers to satisfactory primary care contacts for Southern Swedish cancer survivors (N = 2131).
| Perceived barrier to satisfactory primary care contacts, OR (95% CI) |
|||||||
|---|---|---|---|---|---|---|---|
| Variables | Organizational cooperationb | Access:get in touchc | Access:book an appointmentd | Staff continuitye | Staff competencef | Staff interestg | Any barrierh |
| Age (years) | 1.0 (0.98–1.000) | 1.0 (0.999–1.02) | 1.0 (0.999–1.02) | 1.0 (0.996–1.02) | 1.0 (0.97–0.996) | 1.0 (0.99–1.02) | 1.0 (0.99–1.01) |
| Sex | |||||||
| Man | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Woman | 1.0 (0.8–1.3) | 1.4 (1.1–1.7) | 1.4 (1.2–1.7) | 1.2 (1.01–1.5) | 1.5 (1.1–1.9) | 1.5 (1.2–2.0) | 1.3 (1.03–1.6) |
| Native language | |||||||
| Swedish | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Other | 1.4 (0.9–2.0) | 1.4 (.98–2.1) | 1.7 (1.2–2.4) | 1.6 (1.1–2.3) | 0.9 (0.6–1.5) | 1.3 (0.8–2.0) | 1.6 (1.04–2.5) |
| Education | |||||||
| Post-high school | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| High school or lower | 0.7 (0.6–0.9) | 0.8 (0.6–0.9) | 0.8 (0.7–0.9) | 0.95 (0.8–1.1) | 0.9 (0.7–1.1) | 0.8 (0.6–1.05) | 0.8 (0.7–0.99) |
| Number of comorbidities | |||||||
| 0 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| 1 | 0.9 (0.7–1.2) | 1.1 (0.9–1.4) | 1.1 (0.9–1.4) | 1.3 (1.1–1.7) | 0.9 (0.7–1.2) | 0.9 (0.7–1.3) | 1.2 (0.95–1.5) |
| 2 | 1.6 (1.2–2.1) | 1.6 (1.2–2.2) | 1.7 (1.3–2.3) | 2.1 (1.6–2.7) | 1.2 (0.8–1.7) | 1.7 (1.2–2.5) | 2.2 (1.6–2.9) |
| 3+ | 1.8 (1.3–2.5) | 1.9 (1.4–2.6) | 1.9 (1.4–2.6) | 1.9 (1.4–2.6) | 1.5 (1.1–2.3) | 1.9 (1.3–2.8) | 1.8 (1.3–2.5) |
| Self-rated health | |||||||
| Good to excellent | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Fair to poor | 1.4 (1.1–1.8) | 1.2 (0.96–1.6) | 1.5 (1.2–1.9) | 1.0 (.0.8–1.3) | 1.1 (0.8–1.5) | 1.2 (0.9–1.6) | 1.5 (1.1–2.0) |
| ARNC total number of problems | |||||||
| 0–2 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| 3–5 | 1.8 (1.4–2.4) | 1.3 (1.1–1.7) | 1.3 (0.99–1.6) | 1.2 (0.9–1.5) | 1.8 (1.3–2.5) | 1.2 (0.9–1.7) | 1.5 (1.2–1.9) |
| 6+ | 2.6 (2.0–3.4) | 1.9 (1.5–2.4) | 2.0 (1.6–2.5) | 1.8 (1.4–2.3) | 2.4 (1.7–3.3) | 2.3 (1.7–3.1) | 2.5 (2.0–3.3) |
| Cancer-related primary care contacts | |||||||
| Routine contacts only | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Problem-induced contacts | 2.0 (1.6–2.6) | 1.5 (1.2–2.0) | 1.4 (1.1–1.8) | 1.4 (1.1–1.8) | 2.0 (1.5–2.6) | 1.8 (1.3–2.4) | 1.7 (1.3–2.3) |
| No cancer-related contacts | 0.9 (0.7–1.2) | 0.9 (0.7–1.1) | 1.1 (0.8–1.4) | 1.2 (0.9–1.5) | 0.8 (0.6–1.1) | 0.8 (0.6–1.1) | 1.0 (0.8–1.3) |
| Regular primary care physician | |||||||
| Yes | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| No | 1.0 (0.8–1.2) | 2.0 (1.7–2.4) | 1.6 (1.3–1.9) | 4.2 (3.4–5.1) | 1.3 (0.98–1.6) | 1.3 (1.0–1.7) | 2.0 (1.6–2.4) |
| Care pathway position | |||||||
| Ongoing/planned cancer treatment | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| Active handover: Yes | 1.1 (0.8–1.6) | 1.3 (0.9–1.8) | 1.3 (0.9–1.9) | 1.4 (0.997–2.0) | 1.0 (0.6–1.5) | 1.0 (0.7–1.6) | 1.3 (0.9–1.9) |
| Active handover: No | 1.7 (1.3–2.3) | 1.6 (1.2–2.1) | 1.7 (1.3–2.2) | 1.4 (1.1–1.9) | 1.2 (0.9–1.6) | 1.5 (1.1–2.1) | 1.4 (1.03–1.8) |
| Active handover: Don’t know | 0.8 (0.6–1.1) | 1.4 (1.04–1.8) | 1.3 (.99–1.7) | 1.4 (1.1–1.9) | 0.7 (0.5–1.03) | 1.1 (0.7–1.6) | 1.3 (0.95–1.7) |
aVariables in models: age, sex, native language, number of comorbidities (0–3+), self-rated health, Assessment of Rehabilitation Needs Checklist (ARNC) total number of problems, cancer-related primary care contacts, regular primary care physician, care pathway position.
bNagelkerke R2 = 0.16; Hosmer-Lemeshow test X2 = 8.2, p = 0.42.
cNagelkerke R2 = 0.12; Hosmer-Lemeshow test X2 = 8.6, p = 0.38.
dNagelkerke R2 = 0.12; Hosmer-Lemeshow test X2 = 7.3, p = 0.51.
eNagelkerke R2 = 0.18; Hosmer-Lemeshow test X2 = 11.4, p = 0.18.
fNagelkerke R2 = 0.13; Hosmer-Lemeshow test X2 = 3.3, p = 0.91.
gNagelkerke R2 = 0.12; Hosmer-Lemeshow test X2 = 6.5, p = 0.59.
hNagelkerke R2 = 0.15; Hosmer-Lemeshow test X2 = 6.4, p = 0.60.
Sensitivity analyses excluding response ‘don’t know’ on each barrier in the logistic regression models did not change the overall results (data not shown).
Discussion
Main findings
This cross-sectional survey explored Swedish cancer survivors’ perceptions of barriers with regards to primary care contacts 1–2 years and 5–6 years after cancer diagnosis. Two-thirds of the participants reported one or more barriers. Lack of staff continuity and lack of access were most prevalent. Participants with more comorbidities, more cancer-related health problems, problem-induced primary care contacts, and those who lacked a regular primary care physician had higher odds of perceiving barriers than their counterparts. This also applied to survivors who did not have an active handover from specialized cancer care to primary care compared to those still in cancer treatment.
Strengths and limitations
A strength of this study is the use of recently collected extensive questionnaire data covering multiple aspects of participant characteristics and experience. The questionnaire was developed based on prior studies with cancer survivors, and patients were included in the development process [16,17]. Moreover, all cancer survivors in a large part of southern Sweden were invited to provide their views. Thus, measures have been taken to explore patient views in-depth. The questionnaire also contained several validated parts such as the EORTC QLQ-C30 and the ARNC. However, the complete version of the questionnaire was not pilot tested, which means that reliability and validity are partially uncertain. There appeared to be a floor effect regarding the perception of barriers on all items (32–50% rated ‘not at all’), but a ceiling effect only on ‘staff continuity’ (16% rated ‘to a great extent’). This indicates that the questionnaire could sufficiently distinguish between the different degrees of perceived barriers to satisfactory primary care contacts.
A considerable proportion of participants refrained from providing an opinion (i.e. rated ‘don’t know’) on barriers other than staff continuity and access. This could be interpreted as participants not experiencing a barrier in the other requested areas but is still a limitation. For analysis, we dichotomized ratings into the presence or absence of a barrier. Here, we classified the response ‘don’t know’ as indicating that the patient did not experience a significant barrier and grouped it together with the rating’ not at all’ to form ‘absence of barrier’. This choice increased the amount of data that could be analyzed but also the risk for misclassification. Nonetheless, sensitivity analyses excluding the ‘don’t know’ responses did not change the overall results.
We included cancer survivors diagnosed 1–2 years or 5–6 years prior to questionnaire distribution to capture experiences early as well as later in the cancer continuum and to discern any differences between these patient groups. However, this decreases generalizability to cancer survivors at other points in time after diagnosis. Another possible weakness of this study was the participation rate (2131/8262; 26%). Those older than 70 years and lung cancer survivors had a lower response rate. Thus, there may be a non-response bias which decreases generalizability to older cancer survivors and to lung cancer survivors. In addition, as invitation was limited to those diagnosed with lung, colorectal, breast, and prostate cancer, our results may not be generalizable to survivors from other types of cancers. Further, non-native Swedish speakers were under-represented, with 6% in the study sample compared to slightly more than 20% foreign-born in the Swedish population [26].
Considering care pathway position, using logistic regression analysis, we compared the perception of barriers to satisfactory primary care contacts between participants still in cancer treatment (reference group) and those who had finished their treatment with or without an active handover to primary care. This allowed for conclusions regarding active handover status compared to still being in treatment, but not for direct comparison between active handover and no active handover. It should also be noted that this was a cross-sectional survey; thus, associations can be studied but no conclusions can be made in terms of causation. Finally, we investigated barriers to satisfactory primary care contacts as identified in our prior qualitative studies and in the scientific literature, and we thus cannot make conclusions regarding other possible barriers. Nonetheless, our overall measure of barriers—the presence of any barrier—may serve as an indication.
Findings in relation to prior research
The cancer survivors in our study rated lack of staff continuity and access as the most frequent barriers to satisfactory primary care contacts. These are well-known problems in Swedish primary care, and do not only pertain to cancer survivors [13–15]. In the 2023 International Health Policy Survey, only 32% of Swedish participants reported that they had a regular primary care physician in comparison with the total average of 81% [14]. The benefits of primary care continuity, including on reducing emergency unit visits and mortality rates, have been demonstrated in Sweden and internationally [27,28]. Our results further emphasize the importance of continuity and of timely access for patients with a need for primary care, adding the perspective of cancer survivors. Interestingly, ratings on staff interest and staff competence suggest that these areas were rarely perceived as a barrier to satisfactory primary care contacts by the cancer survivors in our study. These findings to some extent contradict findings in our previous qualitative studies and in other contexts, where primary care staff competence is often put forth as a problem area when it comes to cancer survivorship care [8,10,12,16]. However, the high proportion of participants in our study that refrained from providing an opinion on these areas (38% and 46%) limits any conclusions. As access was reported as a frequent barrier (40%), participants may not have been given the opportunity to see a health care professional at the primary health care center and thus nor to evaluate their interest or competence.
Even if the range was relatively narrow, it may be noted that staff continuity showed the weakest correlation with ratings on satisfaction with primary care contacts (ρ = 0.43), while perceptions of organizational cooperation showed the strongest correlation (ρ = 0.58). Prior studies have generally focused more on organizational factors than on patient experience, and these studies have also reported measures comparable to organizational cooperation as a barrier to the successful provision of survivorship care [8,12]. A frequent suggestion to address this barrier is the creation of survivorship care plans in specialized cancer care which are then transferred to primary care, as a means of planning and communication between the different levels of care but also to include the patient in the process [8,10–12]. Survivorship care plans have, however, been difficult to implement [8].
According to Ronald M. Andersen’s Behavioral Model of Health Services Use, factors affecting the perception of barriers to functioning health care contacts could be divided into mutable and non-mutable [29]. Considering the factors primarily identified in our logistic regression analyses, number of comorbidities (predisposing characteristics) and cancer-related health problems (needs) can be considered to have low mutability in themselves [29]. However, these barriers could still be countered by prioritizing patients with more comorbidities and more problems. This, in turn, could be done through addressing the major mutable factors identified in our analysis. That is, by enabling problem-induced primary care contacts through active handover (referral) from specialized cancer care to primary care, where a referral should include comorbidities and health care needs. This would primarily address barriers due to lack of organizational cooperation but could thus facilitate access and staff continuity—even if policy action is also needed [8,10,13,15,29].
Conclusions
In conclusion, our results emphasize the importance of improved relational continuity and access to primary care from the perspective of cancer survivors. Active handovers from specialized cancer care to primary care could be one way to facilitate this. Such handovers may focus on patients with additional comorbidities, more cancer-related health problems, and on decreasing and facilitating problem-induced health care contacts. Future research may include an intervention focusing on these areas for further evaluation.
Supplementary Material
Acknowledgements
The authors wish to thank all participants who contributed their time and effort to take part in the survey. We also wish to thank statistician Sixten Borg at the Regional Cancer Centre South, Lund, Sweden, for valuable input in general discussions regarding study design and analysis.
Funding Statement
Lars Garpenhag was financed by Regional Cancer Centre South during the work with this study. The study was also supported by research funding from Region Skåne to Susanna Calling.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Declaration of generative AI use
The authors report generative AI was not used in their research or preparation of this manuscript.
Data availability statement
The data that support the findings of this study are restricted by the Swedish Ethical Review Authority in order to protect participants’ privacy.
References
- 1.Sung H, Ferlay J, Siegel RL, et al. Global Cancer Statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2021;71(3):209–249. doi: 10.3322/caac.21660. [DOI] [PubMed] [Google Scholar]
- 2.Swedish National Board of Health and Welfare . Cancer i Sverige 2025 – Relativ överlevnad 1974–2023 [Cancer in Sweden 2025 – Relative survival 1974–2023]. Stockholm: Swedish National Board of Health and Welfare; 2025. Available from: https://www.socialstyrelsen.se/publikationer/cancer-i-sverige-2025–relativ-overlevnad-19742023-2025-5-9540/. [Google Scholar]
- 3.Fitch M, Zomer S, Lockwood G, et al. Experiences of adult cancer survivors in transitions. Support Care Cancer. 2019;27(8):2977–2986. doi: 10.1007/s00520-018-4605-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Buccafusca G, Proserpio I, Tralongo AC, et al. Early colorectal cancer: diagnosis, treatment and survivorship care. Crit Rev Oncol Hematol. 2019;136:20–30. doi: 10.1016/j.critrevonc.2019.01.023. [DOI] [PubMed] [Google Scholar]
- 5.Emery J, Butow P, Lai-Kwon J, et al. Management of common clinical problems experienced by survivors of cancer. Lancet. 2022;399(10334):1537–1550. doi: 10.1016/S0140-6736(22)00242-2. [DOI] [PubMed] [Google Scholar]
- 6.Sandager MT, Rossen S, Hofland DT, et al. Health-related quality of life, needs, and concerns among cancer survivors referred to rehabilitation in primary healthcare setting. Acta Oncol. 2024;63:76–82. doi: 10.2340/1651-226X.2024.19636. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Burg MA, Adorno G, Lopez EDS, et al. Current unmet needs of cancer survivors: analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II. Cancer. 2015;121(4):623–630. doi: 10.1002/cncr.28951. [DOI] [PubMed] [Google Scholar]
- 8.Love M, Debay M, Hudley AC, et al. Cancer survivors, oncology, and primary care perspectives on survivorship care: an integrative review. J Prim Care Community Health. 2022;13:21501319221105248. doi: 10.1177/21501319221105248. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Adam R, Watson E.. The role of primary care in supporting patients living with and beyond cancer. Curr Opin Support Palliat Care. 2018;12(3):261–267. doi: 10.1097/SPC.0000000000000369. [DOI] [PubMed] [Google Scholar]
- 10.Lisy K, Kent J, Piper A, et al. Facilitators and barriers to shared primary and specialist cancer care: a systematic review. Support Care Cancer. 2021;29(1):85–96. doi: 10.1007/s00520-020-05624-5. [DOI] [PubMed] [Google Scholar]
- 11.Collaço N, Lippiett KA, Wright D, et al. Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review. Support Care Cancer. 2024;32(2):120. doi: 10.1007/s00520-023-08278-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Hayes BD, Young HG, Atrchian S, et al. Primary care provider-led cancer survivorship care in the first 5 years following initial cancer treatment: a scoping review of the barriers and solutions to implementation. J Cancer Surviv. 2024;18(2):352–365. doi: 10.1007/s11764-022-01268-y. [DOI] [PubMed] [Google Scholar]
- 13.Ludvigsson JF, Bergman D, Lundgren CI, et al. The healthcare system in Sweden. Eur J Epidemiol. 2025;40(5):563–579. doi: 10.1007/s10654-025-01226-9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Swedish Agency for Health and Care Services Analysis . Vård ur befolkningens perspektiv [Care from the population’s perspective] (PM 2024:3). In: International Health Policy Survey (IHP) 2023; 2024. Available from: https://www.vardanalys.se/digital-publikation/varden-ur-befolkningens-perspektiv/.
- 15.Kohnke H, Zielinski A, Beckman A, et al. Continuity of care in the context of a primary health care reform: a follow-up after the Swedish Patient Choice Reform. Scand J Prim Health Care. 2026;44(1):1–13. doi: 10.1080/02813432.2025.2527856. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Garpenhag L, Halling A, Larsson AM, et al. The role of primary care in the cancer care continuum: a qualitative study of cancer survivors’ experiences. Scand J Prim Health Care. 2023;41(1):13–22. doi: 10.1080/02813432.2022.2145848. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Garpenhag L, Halling A, Calling S, et al. “Being ill was the easy part”: exploring cancer survivors’ reactions to perceived challenges in engaging with primary healthcare. Int J Qual Stud Health Well-Being. 2024;19(1):2361492. doi: 10.1080/17482631.2024.2361492. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.von Elm E, Altman DG, Egger M, et al. The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. PLoS Med. 2007;4(10):e296. doi: 10.1371/journal.pmed.0040296. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–381. doi: 10.1016/j.jbi.2008.08.010. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Harris PA, Taylor R, Minor BL, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform. 2019;95:103208. doi: 10.1016/j.jbi.2019.103208. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Ohlsson-Nevo E, Alkebro I.. Development and validation of the assessment of the cancer-related symptom scale. Poster session presented at MASCC/ISOO 2016 Annual Meeting on Supportive Care in Cancer; 23–25 June; 2016; Adelaide, Australia. [Google Scholar]
- 22.Ohlsson-Nevo E, Fogelkvist M, Lundqvist LO, et al. Validation of the assessment of rehabilitation needs checklist in a Swedish cancer population. J Patient Rep Outcomes. 2024;8(1):142. doi: 10.1186/s41687-024-00818-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23.Aaronson NK, Ahmedzai S, Bergman B, et al. The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–376. doi: 10.1093/jnci/85.5.365. [DOI] [PubMed] [Google Scholar]
- 24.Bjordal K, de Graeff A, Fayers PM, et al. A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients. EORTC Quality of Life Group. Eur J Cancer. 2000;36(14):1796–1807. doi: 10.1016/s0959-8049(00)00186-6. [DOI] [PubMed] [Google Scholar]
- 25.Ware JE, Jr., Sherbourne CD.. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–483. [PubMed] [Google Scholar]
- 26.Statistics Sweden . Utrikes födda i Sverige [Foreign-born in Swedien]. 2026; [updated 24 Feb 2026; cited 21 April 2026]. Available from: https://www.scb.se/hitta-statistik/sverige-i-siffror/manniskorna-i-sverige/utrikes-fodda-i-sverige/.
- 27.Baker R, Freeman GK, Haggerty JL, et al. Primary medical care continuity and patient mortality: a systematic review. Br J Gen Pract. 2020;70(698):e600–e11. doi: 10.3399/bjgp20X712289. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Kohnke H, Zielinski A.. Association between continuity of care in Swedish primary care and emergency services utilisation: a population-based cross-sectional study. Scand J Prim Health Care. 2017;35(2):113–119. doi: 10.1080/02813432.2017.1333303. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Andersen RM. Revisiting the behavioral model and access to medical care: Does it matter? J Health Soc Behav. 1995;36(1):1–10. doi: 10.2307/2137284. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are restricted by the Swedish Ethical Review Authority in order to protect participants’ privacy.