Study Highlights Discrepancies between Patient Preferred and Received Cancer Pain Self-Management Support

Pain is one of the most common and difficult symptoms to manage experienced by cancer patients. Researchers estimate that over half of all individuals with a history of cancer experience chronic pain, especially those with advanced disease. While pain is severe during treatment, it frequently persists after treatment and is exacerbated during transitions from the hospital to home setting, thus requiring patients to self-manage their pain throughout their cancer treatment and beyond. Patients must engage in self-management behaviors to cope with their pain, involving the application of knowledge, skills, and psychosocial and informational support.

Although a clear understanding of patients’ self-management priorities compared to the support they receive is lacking, a recent study published in Oncology Nursing Forum, has reported substantial discrepancies between patients’ desired pain self-management support and what they receive, both in the hospital and at home. The research also identified predictors of pain intensity related to self-management, suggesting possible ways by which oncology nurses and clinicians can better support patients in managing their cancer- and treatment-related pain.

Alice Jane Anderson, MSN, OCN, PhD and colleagues at the University of Connecticut, Storrs, and other institutions carried out a one-time survey among cancer patients recruited between January and August 2020 at Hartford Hospital in Connecticut. Patients responded to flyers posted throughout the cancer center, and a clinical  team member provided information, answered questions about the study, and obtained informed consent from each participant.

As well as demographic and clinical data, the questionnaire addressed patients’ pain intensity and impact on daily function in hospital and at home via the Brief Pain Inventory Short Form (BPI-SF). Health and illness transitions were assessed using the Measurement of Transitions in Cancer Scale, in which patients were asked to evaluate the extent and their management of changes in life phase, situation, or status related to shifts between health and illness, e.g., emotional, physical, social, and spiritual. transitions. Cancer pain self-management was assessed using 26 yes/no questions regarding patients’ preferences for support and receipt of such support, along with four questions about medications and other therapies used and satisfaction with support received.

Thirty-eight patients completed the survey, providing sufficient statistical power for analysis. Most patients either had gastrointestinal cancer (n=13), breast cancer (n=8), or head and neck cancer (n=8). Sixteen patients were receiving curative treatment, 17 were post curative treatment, and 5 were receiving palliative care. Twenty-three had had cancer pain for 6 months or longer. Most patients were satisfied with cancer pain self-management in the hospital and at home (23 and 22, respectively).

Most patients reported congruence between preferred and received support from healthcare providers working in partnership with them to manage pain in the hospital and at home (31 vs 26, respectively), and in communicating clearly about pain management (30 vs 21), demonstration of sympathy (28 vs 29), and acknowledgement of their feelings (23 vs 24).

Less congruence between preferred and received support was reported for receipt of information about alternative therapies, insurance coverage for alternative therapies, or how to consult a pain expert.

A total of 12 (31.6%) patients in hospital and 13 (34.2%) of patients at home reported high levels of pain (BPI-SF score 6-10 out of 10). Mean pain intensity was slightly higher in hospital than at home (4.45 vs 4.21 out of 10), although both were lower than acceptable pain intensity (6.18 vs 5.47, respectively). This suggested that either patients did not receive enough support, or they chose to tolerate a higher amount of pain at home. Patients frequently take less pain medication because of concerns about becoming drowsy and they do not expect their pain to resolve completely, the investigators noted.

The study team had expected that greater congruence between perceived and received cancer pain self-management support would be associated with lower pain intensity, but a more complex picture emerged, they reported.  No congruence was found between preferred and received pain self-management support and pain intensity in the hospital or at home, or with pain interference at home. However, significant associations were seen between average pain at home and ethnicity (P=0.029) and satisfaction with support (P=0.13), and between pain interference at home and phase of care (P=0.032), satisfaction with support (P=0.011), and transitional change (P=0.001). The extent of change during transition of care emerged as a significant predictor of pain intensity in the hospital and pain interference at home.

Overall, this study demonstrated that half of patients did not receive the cancer pain self-management they preferred during the transition from the hospital to home and a large number of patients were unsatisfied with the self-management support they received, both in the hospital and at home. The researchers conclude that there is a need for improved recognition and greater understanding of patients’ needs for cancer pain self-management support, especially during the transition from hospital to home. Specific areas they highlight are medication dosing, side effects, and information about and referral to alternative options. They recommend using care coordination processes to ensure patients receive support that is congruent with their needs so that unmet needs are identified and addressed in both settings, and readmissions for pain treatment can be reduced. These would include screening tools, pain management consultations, patient education materials, provider training, and patient follow-up calls.

The researchers also cautioned that their findings might not be generalizable to other patient populations, because of the homogeneity of the study population (race, marital status, and level of education) as well as its small size and limited geographical region of recruitment. In addition, the study was conducted during the COVID-19 pandemic, which restricted the involvement of caregivers at that time.