Kay Sundberg

Positive and negative consequences of childhood cancer influencing the lives of young adults

The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

Sexual function and experience among long-term survivors of childhood cancer.

AIM The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population. METHODS A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population. RESULTS Male survivors more often reported periods of low sexual interest (p = 0.019), more frequently reported low sexual satisfaction (p = 0.015), less frequently reported feeling sexually attractive (p = 0.020) and reported a lower total number of sexual partners (p = 0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems (p = 0.003), low sexual satisfaction (p = 0.021) and total number of sexual partners (p = 0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group. CONCLUSION The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.

Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group†

There is a need for more knowledge about how survivors of childhood cancer perceive their lives and what influence current health status has on their quality of life. The purpose was to describe this among a group of long‐term survivors and among a comparison group.

Feasibility of an interactive ICT-platform for early assessment and management of patient-reported symptoms during radiotherapy for prostate cancer

PURPOSE The aim of this study was to test the feasibility and acceptability of an Information and Communication Technology platform for assessing and managing patient reported symptoms during radiotherapy for prostate cancer. METHODS In cooperation with a health management company, using a patient experience co-design, we developed the platform operated by an interactive application for reporting and managing symptoms in real time. Nine patients diagnosed with prostate cancer and receiving radiotherapy were recruited from two university hospitals in Sweden. Evidence-based symptoms and related self-care advice specific to prostate cancer were implemented in the application based on a literature review and interviews with patients and health care professionals. In the test of the platform the patients reported symptoms, via a mobile phone, daily for two weeks and were afterwards interviewed about their experiences. RESULTS Overall, the patients found the symptom questionnaire and the self-care advice relevant and the application user friendly. The alert system was activated on several occasions when the symptoms were severe leading to a nurse contact and support so the patients felt safe and well cared for. CONCLUSIONS The platform enabled increased patient involvement and facilitated symptom assessment and communication between the patient and the health care provider. The studys results support further development of the platform, as well as tests in full-scale studies and in other populations.

Self‐reported quality of life in long‐term survivors of childhood lymphoblastic malignancy treated with hematopoietic stem cell transplantation versus conventional therapy

Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health‐related quality of life (HRQoL) in long‐term survivors of childhood lymphoblastic malignancy treated with conventional therapy versus SCT.

Sense of Coherence and Need for Support Among Long-Term Survivors of Childhood Cancer

Background:The concept of sense of coherence (SOC) may be applied to explain individuals’ resources for dealing with the stressors confronted in daily life. Little is known about what impact cancer in childhood may have on the development of SOC. Objective:The objectives of this study were to compare SOC between long-term survivors of childhood cancer and a comparison group and to explore the need for current support among the survivors and the association between need for support and SOC. Methods:Data were collected from 224 long-term survivors aged 18 to 37 years using the 13-item SOC scale and interviews. A matched comparison group (n = 283) randomly selected from the general population was included. Results:There was no significant difference in the mean SOC score between the survivors and the comparison group. Twenty percent of the survivors reported a need for support, a need significantly predicted by a low SOC, as well as surgery and/or radiation treatment often in combination with chemotherapy. Conclusions:Long-term survivors of childhood cancer seem to have resources to cope with stressful situations in life to the same degree as people in general. Survivors with fewer resources to cope and those having received a more intense treatment were more likely to be in need of support. Implications for Practice:The concept of SOC in nursing practice may be helpful to identify and discuss an individual’s resources and impediments to health to better understand the need for support among survivors of childhood cancer.

Family caregivers of women with breast cancer in Iran report high psychological impact six months after diagnosis

PURPOSE To explore how family caregivers of women with breast cancer in Iran describe the areas in life which are important to their quality of life (QoL), and to determine which areas in life that are influenced by having a family member with breast cancer. METHODS The study is descriptive and prospective. A total of 88 family caregivers of women newly diagnosed with breast cancer were interviewed using the Schedule for the Evaluation of Individual Quality of Life (SEIQoL-DW) at a time close to diagnosis and then again at 6 months after. Interviews were analyzed by manifest inductive qualitative content analysis. RESULTS Areas related to the categories Own and Family health, and Relationships were considered to be the most important to QoL. A majority of the family caregivers reported that concerns categorised as Psychological impact had high influence on QoL shortly after diagnosis and the following six months. Other areas that were frequently mentioned at both time points were categorized as Focus on family health, Concerns about the disease, and Change in family relationship. Positive aspects in life were also reported as a consequence to the breast cancer diagnosis. CONCLUSIONS High psychological impact is a concern of family caregivers six months after diagnosis of breast cancer. It is imperative that family caregivers are given early attention, and the opportunity to express their perceptions and needs, as this may lead to a better understanding of their experience, thus providing guidance for supportive interventions.

Effects of an interactive mHealth innovation for early detection of patient-reported symptom distress with focus on participatory care: protocol for a study based on prospective, randomised, controlled trials in patients with prostate and breast cancer

BackgroundCancer patients are predominantly treated as out-patients and as they often experience difficult symptoms and side effects it is important to facilitate and improve patient-clinician communication to support symptom management and self-care. Although the number of projects within supportive cancer care evaluating mobile health is increasing, few evidence-based interventions are described in the literature and thus there is a need for good quality clinical studies with a randomised design and sufficient power to guide future implementations. An interactive information and communications technology platform, including a smartphone/computer tablet app for reporting symptoms during cancer treatment was created in collaboration with a company specialising in health care management. The aim of this paper is to evaluate the effects of using the platform for patients with breast cancer during neo adjuvant chemotherapy treatment and patients with locally advanced prostate cancer during curative radiotherapy treatment. The main hypothesis is that the use of the platform will improve clinical management, reduce costs, and promote safe and participatory care.MethodThe study is a prospective, randomised, controlled trial for each patient group and it is based on repeated measurements. Patients are consecutively included and randomised. The intervention groups report symptoms via the app daily, during treatment and up to three weeks after end of treatment, as a complement to standard care. Patients in the control groups receive standard care alone. Outcomes targeted are symptom burden, quality of life, health literacy (capacity to understand and communicate health needs and promote healthy behaviours), disease progress and health care costs. Data will be collected before and after treatment by questionnaires, registers, medical records and biomarkers. Lastly, participants will be interviewed about participatory and meaningful care.DiscussionResults will generate knowledge to enhance understanding about how to develop person-centred care using mobile technology. Supporting patients’ involvement in their care to identify problems early, promotes more timely initiation of necessary treatment. This can benefit patients treated outside the hospital setting in regard to maintaining their safety.Clinical trial registrationJune 12 2015 NCT02477137 (Prostate cancer) and June 12 2015 NCT02479607 (Breast cancer).

Head and neck cancer patients’ perceptions of quality of life and how it is affected by the disease and enteral tube feeding during treatment

Abstract Aim. To explore individual quality of life in patients with head and neck cancer from diagnosis up to 3 months after termination of radiotherapy. Research questions: 1) Which areas in life are important to quality of life, and which are influenced by the disease and by having oral or enteral nutrition; and 2) Which areas in life are influenced by having a nasogastric feeding tube (NGT) or a percutaneous endoscopic gastrostomy (PEG) tube? Material and methods. Data were collected in 36 patients. Semi-structured interviews were conducted using an extended version of the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and analysed with content analysis. Results. Negative and positive experiences of quality of life in general were about relation to family, own health, and leisure activities. Negative impacts on physical, psychological, existential and social problems, but also positive experiences are described by the patients related to the disease. More than half expressed eating-related problems. Enteral nutrition entailed negative and positive experiences, and no greater variations were described by the patients with NGT or PEG tube. Overall, there were interindividual variations. Conclusions. The patients’ perception of general or disease-related quality of life was not affected by whether they had enteral nutrition or not. From the patients’ perspective neither of the two feeding tubes (NGT or PEG) was clearly in favour. We suggest that more studies are needed on how the choice of enteral feeding tube can be evidence-based, and incorporating the patients’ perspective.