Patients with low activation level report limited possibilities to participate in cancer care

Abstract Background Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing. Objective This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information. Methods In this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register. Results Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels. Patient or Public Contribution Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.


| INTRODUCTION
Patient participation has been the subject of several concept analyses. 1-3 Cahill 2 described a hierarchical relationship within the concept where involvement and collaboration were precursors for participation, with partnership as the goal. Collaboration and sharing of knowledge and power between patients and health care professionals (HCPs) were essentials to achieve partnership. Nilsson et al. 3 identified learning, a caring relationship and reciprocity as the basis for patient participation and that a caring relationship promoted trust.
Collaboration (described here as a relationship between patients and HCPs including sharing information, knowledge and power) was identified as vital for patient participation. 1 Here the authors highlight the importance of the HCPs encouraging actions supporting patients' knowledge and motivation to take active part in their care.
Despite some differences in the descriptions of patient participation reflecting the lack of consensus, important commonalities are reported. Central and recurring topics include building relationships between the patient and the HCPs as well as information exchange for both parts to increase knowledge and understanding.
Research on patient participation has mainly concerned shared decision-making related to treatment options. [4][5][6][7] It has, however, expanded to also include opportunities to acquire and apply knowledge about illness, treatment and survivorship. [8][9][10][11] Patients' opportunities to ask questions and HCPs' recognitions of patients' preferences have been identified as challenges in efforts aiming to improve patient participation. 4,9,10 The importance of fulfilling information needs has been found to have an impact on health-related quality of life (HRQoL). 12 HRQoL is a broad concept covering a person's subjective perception of impact from illness. The concept measures, for example, physical, emotional, cognitive and social aspects as well as symptoms of disease, treatment side effects and well-being. 13,14 Cancer patients' care trajectories are often complex. More often, treatments are administered at outpatient clinics, primary care or even in the patients' home. As a consequence, the responsibility for patients to coordinate their care and self-manage side-effects has increased. 15,16 Patients are therefore expected to take on a more active role in their own care. Patient activation has been defined as having the knowledge, skills and the confidence to take on an active role in one's own care, to self-manage symptoms and collaborate with HCPs to maintain health. 17 Patients with high activation levels are more likely to have improved health outcomes and more positive care experiences. 18,19 Associations between low levels of patient activation and being discouraged and overwhelmed when managing health issues have been found. 20 Low levels of activation have also been associated with less care satisfaction and poorer understanding of one's diagnosis. 21 However, knowledge of patients' different activation levels and possibilities to participate in their own care is sparse.
Complex treatments and fragmented care have also been identified as barriers to participation. 22 Patients diagnosed with gynaecological, haematological, head and neck (H&N) or upper gastrointestinal (GI) cancer usually undergo complex treatments. Few studies have been carried out regarding patient participation and activation among these groups. 23,24 Therefore, more knowledge regarding factors influencing patients' possibilities to participate in their own care is of interest. The present study examines the associations between cancer patients' perceptions of participation and their activation level in a Swedish context.

| Aim
The primary aim was to investigate the associations between patientreported participation in cancer care and patient activation level. The secondary aims were to investigate how sociodemographic characteristics, clinical data as well as HRQoL and helpfulness of received information were associated with patient activation.

| METHODS
In this cross-sectional, population-based study, patient-reported and registry data were collected. The study was approved by the Swedish Ethical Review Authority (Dnr 2019-04582).

| Inclusion criteria
All patients aged ≥18 years diagnosed during 2018 with gynaecological, haematological, H&N or GI cancer in the Stockholm-Gotland region, Sweden, were invited to participate in the study.

| Data collection
The patients were identified through the Swedish Cancer Register, which includes 99% of all clinically and morphologically reported cancer cases in Sweden. 25 To minimize the risks of sending the questionnaires to deceased persons, data on cancer diagnosis were linked to the National Population Register using each individual's unique Swedish personal identification number. The invitation to participate was sent by regular post, together with the questionnaires (described below) and an information letter, to potential participants during November and December 2019, a time period when most patients had completed their primary treatment. The letter described the purpose of the study, that participation was voluntary, the confidentiality process and that a completed questionnaire was considered consent to participate. One reminder was sent to those not responding within 3 weeks. The questionnaires could be filled in using paper and pen, for which a prestamped envelope was included, or online via a secure internet link. Contact information to the responsible researcher was included, giving potential participants possibilities to ask questions about the study. In addition, contact information to a nurse-led regional cancer support service was included.

| Questionnaires
For the purpose of this study, we used the following questionnaires (presented below) to collect data on patient activation, HRQoL, helpfulness of received information, perceived participation and sociodemographic characteristics.

| Patient activation
The Patient Activation Measure (PAM-13 ® ) scale was developed to measure a person's knowledge, skills, beliefs and how comfortable they felt taking on an active role in their care. 26 The PAM-13 ® scale has been widely used for measuring patient activation in different populations, including patients with cancer, 21,27,28 and is validated in Swedish. 29 The instrument consists of 13 items with 4-point response  Table 1. The response options for Q1-Q5 were 'not at all', 'a little', 'a lot' or 'very much', while Q6 was answered on a 3-point scale (no; yes, to some extent; yes, absolutely).

| Statistical analyses
Response scores for the EORTC QLQ-C30 functional scales, the global health status/QoL and EORTC QLQ-INFO25 were linearly transformed into 0-100 scales, according to the EORTC manual, where higher scores represent better functioning and global health status/QoL (EORTC QLQ-C30) and higher rating of the information received (EORTC-QLQ-INFO25), respectively. 33 The mean scores were calculated for each scale. 33 Differences in scale scores were considered clinically significant according to the thresholds for clinically significant changes reported in Osoba et al., 34 where changes of 5-10 points on a 0-100 scale were considered as 'small', 10-20 as 'moderate' and changes of 20 points or more were considered as a 'large' change.
According to the PAM-13 ® manual, the continuous PAM score is intended for tracking changes in activation level over time, while PAM levels can provide information about the individual patient's capacity for self-management at a specific time. For the present study, it was decided to use the PAM level for assessing associations with perceptions of patient participation.
Categorical data are presented as frequencies and percentages, n (%), while ordinal and continuous data are given as means with accompanying standard deviations. Tests of differences between categorical variables were calculated using Pearson's χ 2 test. In the univariate analyses of patient participation (yes/no), patients answering 'very much' or 'a lot' were considered to be participating in their cancer care and were categorized as 'yes'. For question Q2 the response "not at all" were categorised as "yes" and for question Q6 the responses "yes, to some extent" and "yes, absolutely" were categorised as "yes". Unadjusted and adjusted logistic regression models were used to estimate the magnitude of the effect of patient participation and sociodemographic factors on patient activation, reported as odds ratios with accompanying 95% confidence intervals (CIs). PAM-13 ® levels 3 and 4 were defined as being active, while Levels 1 and 2 were defined as being inactive (reference category). The responses 'a lot' and 'very much' for the participation questions were merged into one category. 'Not at all' was used as the reference category in the logistic regression models, except for Q2, which used 'a lot/very much' as a reference category.
Age (years) was included as a continuous variable in the logistic regression models, while male sex, foreign born, cohabiting and college/ university education were included as categorical variables (yes/no), using 'no' as the reference category. In the adjusted models, cancer type was included as an adjustment variable, with upper GI cancer used as the reference category. All regression models used a complete cases analysis approach, i.e. no imputations were used. The le Cessie-van Houwelingen-Copas-Hosmer test 35

| Perceived participation
In univariate analyses, the questions regarding patient participation (Q1-Q5 from the locally developed questionnaire) in cancer care (yes/no) differed significantly between PAM levels for all questions (Table 3)      with norm data based on the Swedish general population stratified for sex and age. 36 The scores, reported by patients at PAM level 1, for both the physical role and social functional scales as well as global health status/QoL were more than 20 points lower compared to the general population, a difference that corresponds to a 'large' clinically significant change. 34 For the emotional and cognitive functional scales, the differences in scores were 10-20 points, corresponding to a 'moderate change'. Patients at PAM level 1 also received referral to palliative care and had access to rehabilitation contacts to a higher extent compared with patients at PAM level 4. This might reflect poorer health among patients at PAM level 1, which in turn may impact their ability to take on an active role in their care.
A higher proportion of patients at PAM 1 reported a preference for being more involved in decisions regarding treatment and care, compared to patients at PAM 4. Discrepancies between cancer patients' preferred and actual involvement in decision-making have previously been found in a German study, which reported the majority of patients (75%) wanting to have a more shared and active role in treatment decisions than experienced. 37 In another study among patients with GI cancer, 46% reported involvement in decisionmaking related to care and treatment to the extent they preferred. 38 In the present study, 58% of patients at PAM level 1 and 77% of patients at PAM level 4 reported that they would have preferred more influence related to treatment options. This could be compared with a previous study, including patients with the same diagnostic groups in the same geographical area, where the corresponding proportion was only 10%. 22 Moreover, the present study found some discrepancies, with patients wanting more influence in decisionmaking related to their treatment and wishing to be more involved in decisions regarding care and treatment, regardless of the PAM level.

| Conclusions
We found strong associations between perceived patient participation and activation levels, with more reported participation among those with higher activation levels. The fact that patients at PAM level 1 reported not being involved to the extent they wanted indicates the importance of systematically identifying the patients with the highest need for support and tailoring interventions to better meet these needs.

| Practice implications
Advances in cancer treatment and care with improvements in survival but also a shift towards shorter hospital stays have led to an increased importance of patients' self-management. It is therefore of great importance to identify patients with a low activation level to support them in gaining the knowledge and confidence needed to be more involved and take on an active role in their own care and self-