Individuals with a germline CDKN2A pathogenic variant (PV) are at high risk of developing melanoma and pancreatic cancer and are therefore offered surveillance. The potential advantages and... Show moreIndividuals with a germline CDKN2A pathogenic variant (PV) are at high risk of developing melanoma and pancreatic cancer and are therefore offered surveillance. The potential advantages and disadvantages associated with genetic testing and surveillance are discussed during medical counseling, although little is known about the associated psychosocial factors that are relevant to this population. This study sought to provide a qualitative exploration of psychosocial factors related to genetic testing and participation in skin and pancreatic surveillance in (potential) carriers of a CDKN2A PV. Fifteen individuals—both at-risk individuals and confirmed variant carriers—participated in one of the three online focus groups. Pre-defined discussion topics, including genetic testing, cancer surveillance, influence on lifestyle and family planning, were discussed. Patients reported that important reasons to engage in genetic testing included the possibility to participate in surveillance to gain control over their cancer risk and to get clarification on the potential carrier status of their children. We observed considerable differences in risk perception and experienced burden of surveillance. Knowledge of the PV has had a positive influence on lifestyle factors and altered attitudes toward life in some. Most participants were not aware of preimplantation genetic testing. This focus group study provided insight into a variety of psychosocial themes related to (potential) carriership of a CDKN2A PV. Future efforts should focus on identifying those who may benefit from additional psychosocial support, development of a centralized source of information, and assessing the knowledge, needs, and timing of counseling for family planning. Show less
Deursen, L. van; Versluis, A.; Vaart, R. van der; Standaar, L.; Struijs, J.; Chavannes, N.; Aardoom, J.J. 2022
Background: Globally, the burden of cancer on population health is growing. Recent trends such as increasing survival rates have resulted in a need to adapt cancer care to ensure a good care... Show moreBackground: Globally, the burden of cancer on population health is growing. Recent trends such as increasing survival rates have resulted in a need to adapt cancer care to ensure a good care experience and manageable expenditures. eHealth is a promising way to increase the quality of cancer care and support patients and survivors. Objective: The aim of this systematic review was 2-fold. First, we aimed to provide an overview of eHealth interventions and their characteristics for Dutch patients with and survivors of cancer. Second, we aimed to provide an overview of the empirical evidence regarding the impact of eHealth interventions in cancer care on population health, quality of care, and per capita costs (the Triple Aim domains). Methods: The electronic databases Web of Science, PubMed, Cochrane, and Ovid PsycINFO were searched using 3 key search themes: eHealth interventions, cancer care, and the Netherlands. The identified interventions were classified according to predetermined criteria describing the intervention characteristics (eg, type, function, and target population). Their impact was subsequently examined using the Triple Aim framework. Results: A total of 38 interventions were identified. Most of these were web portals or web applications functioning to inform and self-manage, and target psychosocial factors or problems. Few interventions have been tailored to age, disease severity, or gender. The results of this study indicate that eHealth interventions could positively affect sleep quality, fatigue, and physical activity of patients with and survivors of cancer. Inconclusive results were found regarding daily functioning and quality of life, psychological complaints, and psychological adjustment to the disease. Conclusions: eHealth can improve outcomes in the Triple Aim domains, particularly in the population health and quality of care domains. Cancer-related pain and common symptoms of active treatment were not targeted in the included interventions and should receive more attention. Further research is needed to fully understand the impact of eHealth interventions in cancer care on participation, accessibility, and costs. The latter can be examined in economic evaluations by comparing eHealth interventions with care as usual. (JMIR Cancer 2022;8(2):e37093) doi: 10.2196/37093 Show less
Crone, M.R.; Slagboom, M.N.; Overmars, A.; Starken, L.; Sande, M.C.E. van de; Wesdorp, N.; Reis, R. 2021
Prevention programs often are directed at either parents or children separately, thereby ignoring the intergenerational aspect of health and well-being. Engaging the family is likely to improve... Show morePrevention programs often are directed at either parents or children separately, thereby ignoring the intergenerational aspect of health and well-being. Engaging the family is likely to improve both the uptake and long-term impact of health behavior change. We integrated an intergenerational approach into a frequently used shared assessment tool for children's care needs. The current study's aim was 2-fold: to monitor this family-engagement tool's effects on both children and their parents' health behaviors and well-being, and to examine the different dynamics of health behavioral change within a family.Method: We followed 12 children ages 10-14 years and their parents for 12 weeks using an explanatory mixed-methods design comprising interviews, questionnaires, and an n-of-1 study. During home visits at the beginning and end of the study, we interviewed children and their parents about their expectations and experiences, and measured their height and weight. Furthermore, we collected secondary data, such as notes from phone and email conversations with parents, as well as evaluation forms from professionals. In the n-of-1 study, families were prompted three times a week to describe their day and report on their vegetable intake, minutes of exercise, health behavior goals, and psychosomatic well-being. The interviews, notes, and evaluation forms were analyzed using qualitative content analyses. For the n-of-1 study, we performed multi-level time-series analyses across all families to assess changes in outcomes after consulting the family-engagement tool. Using regression analyses with autocorrelation correction, we examined changes within individual families.Results: Five child-mother dyads and three child-mother-father triads provided sufficient pre- and post-data. The mean minutes of children's physical activity significantly increased, and mothers felt more energetic, but other outcomes did not change. In consultations related to overweight, the family-engagement tool often was used without setting specific or family goals.Conclusions: The family-engagement approach elicited positive effects on some families' health and well-being. For multifaceted health problems, such as obesity, family-engagement approaches should focus on setting specific goals and strategies in different life domains, and for different family members. Show less
Simon, J.D.H.P.; Loon, F.R.A.A. van; Amstel, J. van; Elmont, G.S.; Zwaan, C.M.; Fiocco, M.; ... ; Michiels, E.M.C. 2020
Background Pain is a common symptom in childhood cancer. Since children spend more time at home, families are increasingly responsible for pain management. This study aimed at assessing pain at... Show moreBackground Pain is a common symptom in childhood cancer. Since children spend more time at home, families are increasingly responsible for pain management. This study aimed at assessing pain at home. Procedure In this longitudinal observational study (April 2016-January 2017), pain severity and prevalence, analgesic use, and pain interference with daily life (Brief Pain Inventory Short Form) were assessed for 4 consecutive days around the time of multiple chemotherapy appointments. Descriptive statistics (frequencies and percentages) were used to report pain severity (with clinically significant pain defined as: score >= 4 on "worst pain" or "average pain in the last 24 h"), pain prevalence, and analgesic use. Mixed models were estimated to assess whether patient characteristics were associated with pain severity, and whether pain severity was associated with interference with daily life. Results Seventy-three children (50.7% male) participated (1-18 years). A majority (N = 57, 78%) experienced clinically significant pain at least once, and 30% reported clinically significant pain at least half the time. In 33.6% of scores >= 4, no medication was used. We found an association between pain severity and interference with daily life: the higher the pain, the bigger the interference (estimated regression coefficient = 1.01 [95% CI 0.98-1.13]). Conclusions The majority of children experienced clinically significant pain at home, and families frequently indicated no medication use. A stronger focus on education and coaching of families seems essential, as well as routine screening for pain in the home setting. Show less
