ABSTRACT
Background: Informal family caregivers play a pivotal role in supporting patients with hematologic malignancies during their treatment. Due to the toxicities of treatment patients often have serious treatment-related side-effects, and with more treatment being placed in the outpatient settings, family caregivers are often the primary source of support between Hospital visits assisting the patient and managing symptoms. The early phase of treatment has been found particularly stressful, and evidence shows that family caregivers are at higher risk of psychological distress and have unmet support needs impacting their ability to support the patient. Thus, finding new ways to support family caregivers is important within a health care context. Peer to peer support has shown great promise in hematologic patients, and there is a need to investigate psychosocial interventions such as peer to peer support in family caregivers. Aims: To investigate the feasibility of a one-on-one peer support intervention in family caregivers of newly diagnosed hematologic patients. Methods: A one-arm feasibility study was conducted. The intervention consisted of 12-weeks of one-on-one support provided by volunteer family caregivers of a hematologic cancer survivor (named caregiver ambassadors) (n = 17) to a family caregiver of a newly diagnosed patient (n =26). Support was delivered based on the needs and preferences of the family caregiver via telephone, text message, e-mail or face-to-face. The intervention also included a preparatory course for the caregiver ambassadors and available support during the intervention. Primary outcomes were feasibility parameters and secondary outcomes were collected at three time points and included anxiety, depression, sleep disturbances, self-efficacy, and quality of life. Results: The peer support intervention was feasible and safe, and participants reported very high satisfaction with the support (75%). Dropout rate was low (7%) and no adverse events were reported. Over time, family caregivers improved their psychosocial well-being, and caregiver ambassadors overall maintained their levels from baseline. Participants were satisfied with the preparatory course enhancing their role preparation as peer supporters and 14 caregiver ambassadors attended the available support network meetings (n = 6). During the intervention, the total number of contacts between participants were 389 with each dyad having an average of 15 contacts during the 12- weeks. Support was most frequently delivered by telephone and text-messages. In-person meetings were less used due to geographical distances, personal preferences including the patients' illness situation, and covid-19. Summary/Conclusion: We tested the feasibility of a new peer to peer intervention in family caregivers of newly diagnosed hematologic patients. The results demonstrated that the intervention was feasible, safe, and satisfactory in both the caregiver ambassador and family caregiver groups. Flexibility in the delivery and frequency of support was essential and accommodated the individual support needs and preferences. Providing preparation and support for caregiver ambassadors was important. This family caregiver peer to peer intervention has the potential to be a new model of support incorporated in the clinical setting.
ABSTRACT
Background: The severe, acute respiratory syndrome, coronavirus 2 (SARS-CoV-2), leading to coronavirus-19 (COVID-19), was detected for the first time in Wuhan, China in December 2019. In general, governments and health authorities have taken precautions during the COVID-19 pandemic to reduce viral spread and protect vulnerable citizens. Patients with multiple myeloma (MM) have an increased risk of being infected with COVID-19 and developing a fatal course due to the MM-related immunodeficiency (Glenthøj, A et al. PMID: 32939853). To some extent, the COVID-19 pandemic has changed standard of care towards extended use of oral regimens and limiting hospital visits (Terpos E et al.PMID: 32444866). We aimed to investigate the quality of life (QoL) of Danish patients with MM during the COVID-19 pandemic. We hypothesized that patients living alone and those under the age of 65 years, as a consequence of the pandemic, would experience impaired QoL due to social isolation and fear of infection with SARS-CoV-2. Methods: The Danish prospective, nation-wide, observational survey “Quality of life in Danish patients with multiple myeloma” (QoL-MM) (Nielsen LK et al. PMID: 30656677) framed our study. In QoL-MM, survey data are obtained at enrolment and subsequently at 12 follow-up time points over a two-year period. The following PRO questionnaires are used;the cancer-generic instrument of European Organisation for Research and Treatment of Cancer Quality of life (EORTC) QLQ-C30 (EORTC QLQ-C30), the Multiple Myeloma module QLQ-MY20 (EORTC QLQ-MY20), the Chemotherapy-Induced Peripheral Neuropathy module (EORTC QLQ-CIPN20) and the Short-form health survey version 2 (SF12v2). In the present study, a subpopulation of the QoL-MM cohort was constructed, based on the response time of the questionnaires. QoL was compared using patient-reported outcome (PRO) data obtained before and during the COVID-19 pandemic at group level. In a Danish context, first wave was defined as April to June 2020 and the second wave as November 2020 to January 2021. The QoL data were analyzed using mixed effects linear regression, with a year-period-interaction. Pre-COVID versus COVID mean domain score difference was considered evident, if the difference was both statistically significant (p-value <0.05) and clinically relevant, using minimal important difference (MID) defined as 0.3 standard deviation of the mean score. Results: The study included 616 patients (63% newly diagnosed and 37% relapsed) with a mean age of 68.2 years (standard deviation, 9.2);40% were females;76% were married/cohabiting, and 24% single. Questionnaire completion rates during the investigated periods were between 96% and 97%. In total, 1,685 completed sets of questionnaires were included in the analyses. The patients reported no statistically significant and clinically relevant difference in QoL during the first and second waves of the COVID-19 pandemic, compared to one year earlier, see table 1. When analyzing the subpopulations, we found that patients below 65 years reported improved physical health summaries (p-value 0.016), decreased fatigue (p-value < 0.001), less insomnia (p-value 0.002) and improved role functioning (p-value <0.001) during the first wave, reaching both statistical significance and the threshold of MID. The group of patients living alone reported improved role functioning during the first wave, reaching both statistical significance (p-value <0.001) and the threshold of MID. These findings were not evident during the second wave, see table 1. Conclusion: As a group, Danish patients with MM did not report impaired QoL during the COVID-19 pandemic. In contrary, we observed improvements in some domains in patients below 65 years. Our observations indicate that the patients with MM have felt cared for and in good hands during the first and second waves of the COVID-19 pandemic. However, part of the reason for our finding of no negative impact on QoL by the pandemic could be that the questionnaires used were not developed to capture the impact of the pandemi on QoL. Importantly, our results suggest that QoL data collected in clinical trials during the pandemic allow interpretation without adjusting for the impact of the pandemic. [Formula presented] Disclosures: Redder: Janssen-Ciliag: Research Funding. Frederiksen: Alexion: Research Funding;Gilead: Research Funding;Abbvie: Research Funding;Janssen Pharmaceuticals: Research Funding;Novartis: Research Funding. https://www.qualitymetric.com/health-surveys/the-sf-12v2-pro-health-survey/
ABSTRACT
Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) was detected for the first time in Wuhan, China, causing the coronavirus disease 2019 (COVID-19). Mortality rate in patients with multiple myeloma (MM) hospitalized due to COVID-19 has been reported to be 50% higher compared to non-cancer patients. The COVID-19 pandemic has resulted in adaption of myeloma care recommendations including key principles of limiting hospital visits by use of telemedicine communication and to use oral agents as much as possible and/or allowing treatment breaks. To mitigate the risk of COVID-19 spreading, extensive national lockdowns have been practiced and patients and caregivers have been encouraged to practice social distancing. Aims: The aim was to investigate the impact of the first and second wave of the COVID-19 pandemic on quality of life (QoL) in Danish patients with MM. Methods: The study was designed as a cross-sectional study comparing QoL in patients with MM using data obtained the year before the pandemic (pre-COVID) as a reference in comparison to the COVID period. In a Danish context, first wave was defined as April to June 2020 and the second wave as November 2020 to January 2021. The survey data originates from an ongoing cohort study, "Quality of life in Danish Multiple Myeloma patients" (QoL-MM), which is a Danish prospective, nationwide, observational survey, initiated in February 2017. Survey data are obtained at enrolment and subsequently at 12 follow-up time points over a two-year period including 24 QoL domains assessed by the European Organisation for Research and Treatment of Cancer Quality of life QLQC30, the Multiple Myeloma module QLQ-MY20, the Chemotherapy- Induced Peripheral Neuropathy module and the Short-form health survey version 2. The QoL data was analysed using mixed effects linear regression, with a year-period-interaction. Pre-COVID versus COVID mean domain score difference was considered evident, if the difference was both statistically significant (p-value <0.05) and clinical relevant using minimal important difference defined as 0.3 standard deviation of the mean score of all included 2019 answers. For data validation, the mean scores of the pre-COVID period were compared to the mean scores for 2018. Results: In the study, 616 patients was included (63% newly diagnosed and 37% relapsed) with a mean age of 68.2 years (standard deviation 9.2). Females represent 40% of the population. Seventy-six percent were married/ cohabiting, 24% single. The completion rates during the investigated periods were between 94% to 97%, and a total of 2,576 completed sets of questionnaires were included in the analyses. The Danish MM patients reported no statistical significant and clinical relevant difference in QoL during the first or second wave of the COVID-19 pandemic compared to one year earlier. Summary/Conclusion: Patients with MM infected by COVID-19 are in increased risk of dying and the pandemic has to some extent affected the usual clinical care program and caused restrictions in their everyday living. However, the pandemic does not seem to impact the patients′ reporting's of QoL. A limitation, however, may be that the questionnaires used are not validated to capture psychosocial health during a pandemic. Still, our results is important as it documents that QoL collected in clinical trials during the pandemic allow interpretation without adjusting for the impacts of the pandemic.