Specialist versus primary care prostate cancer follow-up:A process evaluation of a randomized controlled trial

Background: A randomized controlled trial (RCT) is currently comparing the effectiveness of specialist- versus primary care-based prostate cancer follow-up. This process evaluation assesses the reach and identified constructs for the implementation of primary care-based follow-up. Methods: A mixed-methods approach is used to assess the reach and the implementation through the Consolidated Framework for Implementation Research. We use quantitative data to evaluate the reach of the RCT and qualitative data (interviews) to indicate the perspectives of patients (n = 15), general practitioners (GPs) (n = 10), and specialists (n = 8). Thematic analysis is used to analyze the interview transcripts. Results: In total, we reached 402 (67%) patients from 12 hospitals and randomized them to specialist- (n = 201) or to primary care-based (n = 201) follow-up. From the interviews, we identify several advantages of primary care- versus specialist-based follow-up: it is closer to home, more accessible, and the relationship is more personal. Nevertheless, participants also identified challenges: guidelines should be implemented, communication and collaboration between primary and secondary care should be improved, quality indicators should be collected, and GPs should be compensated. Conclusion: Within an RCT context, 402 (67%) patients and their GPs were willing to receive/provide primary care-based follow-up. If the RCT shows that primary care is equally as effective as specialist-based follow-up, the challenges identified in this study need to be addressed to enable a smooth transition of prostate cancer follow-up to primary care. Netherlands Trial Registry, Trial NL7068 (NTR7266)

Type of treatment, symptoms and patient satisfaction play an important role in primary care contact during prostate cancer follow-up:Results from the population-based PROFILES registry

BACKGROUND: With the increasing attention for the role of General Practitioners (GPs) after cancer treatment, it is important to better understand the involvement of GPs following prostate cancer treatment. This study investigates factors associated with GP contact during follow-up of prostate cancer survivors, such as patient, treatment and symptom variables, and satisfaction with, trust in, and appraised knowledge of GPs. METHODS: Of 787 prostate cancer survivors diagnosed between 2007 and 2013, and selected from the Netherlands Cancer Registry, 557 (71%) responded to the invitation to complete a questionnaire. Multivariable logistic regression analyses were performed to investigate which variables were associated with GP contact during follow- up. RESULTS: In total, 200 (42%) prostate cancer survivors had contact with their GP during follow-up, and 76 (16%) survivors preferred more contact. Survivors who had an intermediate versus low educational level (OR = 2.0) were more likely to have had contact with their GP during follow-up. Survivors treated with surgery (OR = 2.8) or hormonal therapy (OR = 3.5) were also more likely to seek follow-up care from their GP compared to survivors who were treated with active surveillance. Patient reported bowel symptoms (OR = 1.4), hormonal symptoms (OR = 1.4), use of incontinence aids (OR = 1.6), and being satisfied with their GP (OR = 9.5) were also significantly associated with GP contact during follow-up. CONCLUSIONS: Education, treatment, symptoms and patient satisfaction were associated with GP contact during prostate cancer follow-up. These findings highlight the potential for adverse side-effects to be managed in primary care. In light of future changes in cancer care, evaluating prostate cancer follow-up in primary care remains important

Primary care physicians’ knowledge and confidence in providing cancer survivorship care: a systematic review

Purpose: To systematically review existing literature on knowledge and confidence of primary care physicians (PCPs) in cancer survivorship care. Methods: PubMed, Ovid MEDLINE, CINAHL, Embase, and PsycINFO were searched from inception to July 2022 for quantitative and qualitative studies. Two reviewers independently assessed studies for eligibility and quality. Outcomes were characterized by domains of quality cancer survivorship care. Results: Thirty-three papers were included, representing 28 unique studies; 22 cross-sectional surveys, 8 qualitative, and 3 mixed-methods studies. Most studies were conducted in North America (n = 23) and Europe (n = 8). For surveys, sample sizes ranged between 29 and 1124 PCPs. Knowledge and confidence in management of physical (n = 19) and psychosocial effects (n = 12), and surveillance for recurrences (n = 14) were described most often. Generally, a greater proportion of PCPs reported confidence in managing psychosocial effects (24–47% of PCPs, n= 5 studies) than physical effects (10–37%, n = 8). PCPs generally thought they had the necessary knowledge to detect recurrences (62–78%, n = 5), but reported limited confidence to do so (6–40%, n = 5). There was a commonly perceived need for education on long-term and late physical effects (n = 6), and cancer surveillance guidelines (n = 9). Conclusions: PCPs’ knowledge and confidence in cancer survivorship care varies across care domains. Suboptimal outcomes were identified in managing physical effects and recurrences after cancer. Implications for Cancer Survivors: These results provide insights into the potential role of PCPs in cancer survivorship care, medical education, and development of targeted interventions

The role of routine follow-up visits of prostate cancer survivors in addressing supportive care and information needs: a qualitative observational study

Purpose: To understand the role of routine follow-up visits in addressing prostate cancer survivors’ supportive care and information needs. Methods: We audio-recorded follow-up visits of 32 prostate cancer survivors. Follow-up visits were analyzed according to the Verona Network of Sequence Analysis. We categorized survivors’ cues, concerns, and questions into five supportive care domains and divided the responses by the healthcare professionals into providing versus reducing space that is to determine whether or not the response invites the patient to talk more about the expressed cue or concern. Results: Prostate cancer survivors mostly expressed cues, concerns, and questions (in the health system and information domain) about test results, potential impotence treatment, follow-up appointments, and (their) cancer treatment during follow-up visits. Survivors also expressed urinary complaints (physical and daily living domain) and worry about the recurrence of prostate cancer (psychological domain). Healthcare professionals were two times more likely to provide space on cues and concerns related to the physical and daily living domain than to psychological related issues. Conclusion: Follow-up visits can serve to address prostate cancer survivors’ supportive care and information needs, especially on the health system, information, and physical and daily living domain. Survivors also expressed problems in the psychological domain, although healthcare professionals scarcely provided space to these issues. We would like to encourage clinicians to use these results to personalize follow-up care. Also, these data can be used to develop tailored (eHealth) interventions to address supportive care and information needs and to develop new models of survivorship care delivery

Specialist versus Primary Care Prostate Cancer Follow-Up: A Process Evaluation of a Randomized Controlled Trial

Background: A randomized controlled trial (RCT) is currently comparing the effectiveness of specialist-versus primary care-based prostate cancer follow-up. This process evaluation assesses the reach and identified constructs for the implementation of primary care-based follow-up. Methods: A mixed-methods approach is used to assess the reach and the implementation through the Consolidated Framework for Implementation Research. We use quantitative data to evaluate the reach of the RCT and qualitative data (interviews) to indicate the perspectives of patients (n = 15), general practitioners (GPs) (n = 10), and specialists (n = 8). Thematic analysis is used to analyze the interview transcripts. Results: In total, we reached 402 (67%) patients from 12 hospitals and randomized them to specialist-(n = 201) or to primary care-based (n = 201) follow-up. From the interviews, we identify several advantages of primary care-versus specialist-based follow-up: it is closer to home, more accessible, and the relationship is more personal. Nevertheless, participants also identified challenges: guidelines should be implemented, communication and collaboration between primary and secondary care should be improved, quality indicators should be collected, and GPs should be compensated. Conclusion: Within an RCT context, 402 (67%) patients and their GPs were willing to receive/provide primary care-based follow-up. If the RCT shows that primary care is equally as effective as specialist-based follow-up, the challenges identified in this study need to be addressed to enable a smooth transition of prostate cancer follow-up to primary care

Design of the PROstate cancer follow-up care in Secondary and Primary hEalth Care study (PROSPEC):A randomized controlled trial to evaluate the effectiveness of primary care-based follow-up of localized prostate cancer survivors

BACKGROUND: In its 2006 report, From cancer patient to cancer survivor: lost in transition, the U.S. Institute of Medicine raised the need for a more coordinated and comprehensive care model for cancer survivors. Given the ever increasing number of cancer survivors, in general, and prostate cancer survivors, in particular, there is a need for a more sustainable model of follow-up care. Currently, patients who have completed primary treatment for localized prostate cancer are often included in a specialist-based follow-up care program. General practitioners already play a key role in providing continuous and comprehensive health care. Studies in breast and colorectal cancer suggest that general practitioners could also consider to provide survivorship care in prostate cancer. However, empirical data are needed to determine whether follow-up care of localized prostate cancer survivors by the general practitioner is a feasible alternative. METHODS: This multicenter, randomized, non-inferiority study will compare specialist-based (usual care) versus general practitioner-based (intervention) follow-up care of prostate cancer survivors who have completed primary treatment (prostatectomy or radiotherapy) for localized prostate cancer. Patients are being recruited from hospitals in the Netherlands, and randomly (1:1) allocated to specialist-based (N = 195) or general practitioner-based (N = 195) follow-up care. This trial will evaluate the effectiveness of primary care-based follow-up, in comparison to usual care, in terms of adherence to the prostate cancer surveillance guideline for the timing and frequency of prostate-specific antigen assessments, the time from a biochemical recurrence to retreatment decision-making, the management of treatment-related side effects, health-related quality of life, prostate cancer-related anxiety, continuity of care, and cost-effectiveness. The outcome measures will be assessed at randomization (≤6 months after treatment), and 12, 18, and 24 months after treatment. DISCUSSION: This multicenter, prospective, randomized study will provide empirical evidence regarding the (cost-) effectiveness of specialist-based follow-up care compared to general practitioner-based follow-up care for localized prostate cancer survivors. TRIAL REGISTRATION: Netherlands Trial Registry, Trial NL7068 (NTR7266). Prospectively registered on 11 June 2018

Quality of early prostate cancer follow-up care from the patients’ perspective

Purpose: To develop optimal cancer survivorship care programs, this study assessed the quality of prostate cancer follow-up care as experienced by patients shortly after completion of primary treatment. Methods: We surveyed 402 patients with localized prostate cancer participating in a randomized controlled trial comparing specialist versus primary care–based follow-up. For the current study, we used patient-reported data at the time of the first follow-up visit at the hospital, prior to randomization. We assessed patients’ ratings of the quality of follow-up care using the Assessment of Patient Experiences of Cancer Care survey. This survey includes 13 scales about different aspects of care and an overall rating of care. Multivariable linear regression analysis was used to identify factors associated with perceived follow-up quality. Results: Patients reported positive experiences at first follow-up for 9 of 13 scales, with mean (M) scores ranging from 79 to 97 (on a 0–100 response scale). Patients reported most frequently (over 70%) suboptimal care regarding symptom management (84%; M = 44, SD = 37), health promotion (75%; M = 45, SD = 39), and physician’s knowledge about patients’ life (84%; M = 65, SD = 23). Overall, patients’ lower quality of follow-up ratings were associated with younger age, higher education level, having more than one comorbid condition, having undergone primary surgery, and experiencing significant symptoms. Conclusion: Patients with prostate cancer are generally positive about their initial, hospital-based follow-up care. However, efforts should be made to improve symptom management, health promotion, and physician’s knowledge about patients’ life. These findings point to areas where prostate cancer follow-up care can be improved

Quality of early prostate cancer follow-up care from the patients’ perspective

Purpose: To develop optimal cancer survivorship care programs, this study assessed the quality of prostate cancer follow-up care as experienced by patients shortly after completion of primary treatment. Methods: We surveyed 402 patients with localized prostate cancer participating in a randomized controlled trial comparing specialist versus primary care–based follow-up. For the current study, we used patient-reported data at the time of the first follow-up visit at the hospital, prior to randomization. We assessed patients’ ratings of the quality of follow-up care using the Assessment of Patient Experiences of Cancer Care survey. This survey includes 13 scales about different aspects of care and an overall rating of care. Multivariable linear regression analysis was used to identify factors associated with perceived follow-up quality. Results: Patients reported positive experiences at first follow-up for 9 of 13 scales, with mean (M) scores ranging from 79 to 97 (on a 0–100 response scale). Patients reported most frequently (over 70%) suboptimal care regarding symptom management (84%; M = 44, SD = 37), health promotion (75%; M = 45, SD = 39), and physician’s knowledge about patients’ life (84%; M = 65, SD = 23). Overall, patients’ lower quality of follow-up ratings were associated with younger age, higher education level, having more than one comorbid condition, having undergone primary surgery, and experiencing significant symptoms. Conclusion: Patients with prostate cancer are generally positive about their initial, hospital-based follow-up care. However, efforts should be made to improve symptom management, health promotion, and physician’s knowledge about patients’ life. These findings point to areas where prostate cancer follow-up care can be improved

Perceived Care and Well-being of Patients with Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry

Importance: As the resolution of the coronavirus disease 2019 (COVID-19) crisis is unforeseeable, and/or a second wave of infections may arrive in the fall of 2020, it is important to evaluate patients' perspectives to learn from this. Objective: To assess how Dutch patients with cancer perceive cancer treatment and follow-up care (including experiences with telephone and video consultations [TC/VC]) and patients' well-being in comparison with a norm population during the COVID-19 crisis. Design, Setting, and Participants: Cross-sectional study of patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a norm population who completed a questionnaire from April to May 2020. Main Outcomes and Measures: Logistic regression analysis assessed factors associated with changes in cancer care (treatment or follow-up appointment postponed/canceled or changed to TC/VC). Differences in quality of life, anxiety/depression, and loneliness between patients and age-matched and sex-matched norm participants were evaluated with regression models. Results: The online questionnaire was completed by 4094 patients (48.6% response), of whom most were male (2493 [60.9%]) and had a mean (SD) age of 63.0 (11.1) years. Of these respondents, 886 (21.7%) patients received treatment; 2725 (55.6%) received follow-up care. Treatment or follow-up appointments were canceled for 390 (10.8%) patients, whereas 160 of 886 (18.1%) in treatment and 234 of 2725 (8.6%) in follow-up had it replaced by a TC/VC. Systemic therapy, active surveillance, or surgery were associated with cancellation of treatment or follow-up appointment. Younger age, female sex, comorbidities, metastasized cancer, being worried about getting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and receiving supportive care were associated with replacement of a consultation with a TC/VC. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints or concerns. Most patients who had a TC/VC preferred a face-to-face consultation, but 151 of 394 (38.3%) were willing to use a TC/VC again. Patients with cancer were more worried about getting infected with SARS-CoV-2 compared with the 977 norm participants (917 of 4094 [22.4%] vs 175 of 977 [17.9%]). Quality of life, anxiety, and depression were comparable, but norm participants more often reported loneliness (114 of 977 [11.7%] vs 287 of 4094 [7.0%]) than patients with cancer (P =.009). Conclusions and Relevance: Among patients with cancer in the Netherlands, 1 in 3 reported changes in cancer care in the first weeks of the COVID-19 crisis. Long-term outcomes need to be monitored. The crisis may affect the mental well-being of the general population relatively more than that of patients with cancer