Everyday Life Six to Eight Months After Esophagectomy for Cancer: A Qualitative Study.

BACKGROUND/AIM: This study sought to explore the life situation of male patients at a critical stage after surgery for esophageal cancer and to enlighten their need for support from healthcare providers during their return to daily life. PATIENTS AND METHODS: In-depth and semi-structured interviews were conducted with six patients following surgery for esophageal cancer. The interview data were analyzed via inductive thematic analysis. RESULTS: The patient quality of life was seriously impacted by their remaining symptoms six to eight months after surgery. Challenges associated with eating and uncontrolled diarrhea were reported to be the most demanding symptoms, limiting social activities and hindering the patients' attempts to resume their former identity. In many cases, the patients were dependent on their spouses with regard to the activities of daily life. Being surgically treated for a cancer with a potentially poor prognosis was experienced as akin to living in limbo. Uncertainty regarding their future health posed challenges for the patients in terms of their vocational life and general life planning. CONCLUSION: Patients may require additional support in coping with their new life situation following surgery for esophageal cancer. The heavy burden on a patient spouse should also be recognized from the time of hospital discharge. Moreover, patients may benefit from closer follow-up by healthcare providers, including support groups to help cope with insecurity and fear of relapse.

Navigation-Assisted Surgery for Locally Advanced Primary and Recurrent Rectal Cancer.

BACKGROUND: In some surgical disciplines, navigation-assisted surgery has become standard of care, but in rectal cancer, indications for navigation and the utility of different technologies remain undetermined. METHODS: The NAVI-LARRC prospective study (NCT04512937; IDEAL Stage 2a) evaluated feasibility of navigation in patients with locally advanced primary (LARC) and recurrent rectal cancer (LRRC). Included patients had advanced tumours with high risk of incomplete (R1/R2) resection, and navigation was considered likely to improve the probability of complete resection (R0). Tumours were classified according to pelvic compartmental involvement, as suggested by the Royal Marsden group. The BrainlabTM navigation platform was used for preoperative segmentation of tumour and pelvic anatomy, and for intraoperative navigation with optical tracking. R0 resection rates, surgeons' experiences, and adherence to the preoperative resection plan were assessed. RESULTS: Seventeen patients with tumours involving the posterior/lateral compartments underwent navigation-assisted procedures. Fifteen patients required abdominosacral resection, and 3 had resection of the sciatic nerve. R0 resection was obtained in 6/8 (75%) LARC and 6/9 (69%) LRRC cases. Preoperative segmentation was time-consuming (median 3.5 h), but intraoperative navigation was accurate. Surgeons reported navigation to be feasible, and adherence to the resection plan was satisfactory. CONCLUSIONS: Navigation-assisted surgery using optical tracking was feasible. The preoperative planning was time-consuming, but intraoperative navigation was accurate and resulted in acceptable R0 resection rates. Selected patients are likely to benefit from navigation-assisted surgery.

Psychological and social challenges of patients with locally advanced and metastatic gastrointestinal stromal tumours (GIST) on long-term treatment with tyrosine kinase inhibitors: a qualitative study with patients and medical oncologists.

PURPOSE: Tyrosine kinase inhibitors (TKIs) have revolutionized the treatment of locally advanced and metastatic gastrointestinal stromal tumours (GISTs). Patients are experiencing prolonged survival but often at the expense of their health-related quality of life. It is not only the physical side effects that impact GIST patients' daily lives but also the psychological and social challenges they have to deal with. This qualitative study aimed to explore the psychological and social life challenges of GIST patients with locally advanced and metastatic disease on ≥ 5 years TKI treatment. METHODS: Semi-structured interviews with 15 locally advanced and/or metastatic GIST patients and 10 medical oncologists with experience of delivering care to this specific patient group were conducted. Thematic analysis was used to interpret the data. RESULTS: Psychological challenges expressed by participants concerned fears, scanxiety, negative change in emotion and mood, doubts about their treatment and follow-up, living with uncertainty, lack of understanding from others or healthcare professionals, and constantly being reminded of their illness. Challenges regarding social health included financial difficulties, challenges in relationships, concerns about fertility and parenting, work, and impact on social activities. CONCLUSION: The reported psychological and social challenges can significantly hamper the overall quality of life of GIST patients. Some challenges were clearly underreported and hardly recognized by medical oncologist, as they may tend to focus on the physical side effects and clinical outcomes of treatment. Therefore, it is essential to take the patient's perspective into account in research and clinical practice to ensure optimal care for this patient group.

Understanding sexual health concerns among adolescents and young adults with differences of sex development: a qualitative study.

PURPOSE: Differences of sex development (DSD) are congenital conditions that involve variations in individuals' sex chromosomes, genes, external and/or internal genitalia, hormones, and/or secondary sex characteristics. This study sought to elucidate the experiences of adolescents and young adults living with DSD by focusing on their experiences of intimacy and sexual health. METHODS: An interpretative phenomenological research design was adopted. Semi-structured qualitative interviews were conducted with 11 Norwegian adolescents and young adults aged 16-26 years who had five different DSD conditions. The interview findings were analysed by means of a reflexive thematic analysis. RESULTS: The participants reported feeling different, both in terms of how their body functioned and how their body looked. Lack of knowledge increased this feeling of differentness. Moreover, lack of everyday language with which to talk about intimacy and sexual concerns resulted in the participants feeling stigma. Anticipating stigmatization and lacking everyday language complicated the participants' communication regarding their DSD and sexual health. CONCLUSIONS: The sexual experiences of adolescents and young adults with DSD are diverse. Fear of stigmatization and lack of everyday language complicate communication with healthcare professionals and others. Understanding their unique needs is crucial to helping individuals achieve good sexual health.

Exploring the Patient Perspective of Bone Sarcoma Survivors Who Have Undergone Particle Radiotherapy Abroad.

BACKGROUND/AIM: Sarcoma patients' experiences of their health-related quality of life and late effects following particle therapy are sparse. Such knowledge is essential to optimize treatment compliance and follow-up care related to this rapidly developing, but still centralized treatment modality. PATIENTS AND METHODS: This qualitative study has an explorative design and applies a phenomenological and hermeneutical approach based on semi-structured interviews with 12 bone sarcoma patients who had undergone particle therapy abroad. The data were interpreted using thematic analysis. RESULTS: Several of the participants called for more information about how the treatment would be carried out, its acute side effects and late complications. Most participants had positive experiences from the treatment and their stay abroad, but several struggled with late effects and other challenges. Themes that emerged from the analysis were "importance of being prepared", "treatment and stay abroad", "basically healthy, but with health problems and challenges". CONCLUSION: Oncologists who inform and refer patients to particle therapy abroad must have sufficient experience of this treatment modality, prognoses, acute side effects, and late complications. Findings derived from this study may improve treatment preparation and compliance, enhance understanding of individual patient challenges to reduce stress and worry, and lead to better follow-up care and consequently quality of life of this selected group of bone sarcoma patients.

'It was Supposed to be a Secret': a study of disclosure and stigma as experienced by adults with differences of sex development.

Background: Differences of sex development (DSD) are a group of congenital conditions that involve variations in sex chromosomes, genes, external and/or internal genitalia, hormones, and secondary sex characteristics. The present study sought to highlight the everyday challenges faced by adults with DSD as well as to understand how issues such as disclosure, information sharing, and stigma affect their daily life. Method: We applied an interpretative phenomenological study design to explore the first-person perspectives. Semi-structured qualitative interviews of 15 adults aged 30-70 years living in Norway with five different DSD conditions (Turner syndrome, Klinefelter syndrome, congenital adrenal hyperplasia, Mayer-Rokitansky-Küster-Hauser syndrome and hypospadias) were analyzed using reflexive thematic analysis. Results: Living with DSD, indicated doing a balancing act between hiding and/or exposing what participants perceived differed from others bodies. Communication regarding sensitive topics proved to be important. The participants were doing invisible work to manage the balance between concealing and revealing their feeling of differentness, a work effort that was not necessarily perceivable to others but still affected everyday life of the participants. Furthermore, the participants' experiences of disclosure changed over time, as those who were diagnosed during childhood found that disclosure became easier with advancing age. However, being diagnosed as an adult seemed to increase the feeling of difference and complicate disclosure. Conclusion: Individuals with DSD should receive adequate information and have someone to practice disclosure towards, which could possibly strengthen the psychosocial aspects of living with their condition. The results emphasize the need to help individuals with DSD achieve a balance between disclosure and self-protection, overcome stigma, and determine when and how information about their DSD should be provided to others.

Hope as a Lifeline: Imatinib Discontinuation in Patients With Oligometastatic Gastrointestinal Stromal Tumours.

BACKGROUND/AIM: This study explored how highly selected oligometastatic gastrointestinal stromal tumour (GIST) patients subjectively experienced the discontinuation of imatinib (IM) treatment. PATIENTS AND METHODS: Being an exploratory qualitative study, we applied a phenomenological and hermeneutical approach. We conducted in-depth semi-structured interviews with nine oligometastatic GIST patients who were in long-term clinical remission. The gathered data were interpreted using a thematic analysis. RESULTS: The analysis of the interview data revealed four main themes; getting one's life back, fear of recurrence, hope as a lifeline and the pros/cons of participating in this clinical trial. The participants disclosed that hope of being cancer free and without the side-effects of IM was essential for both participating in this study and enduring the uncertainty of drug discontinuation. CONCLUSION: Use of a qualitative approach in clinical trials can result in a better understanding of patients' perspectives and therefore lead to improved clinical practice.

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group.

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm height were specific physical issues for breast sarcoma patients, whereas respiratory problems were only mentioned by thoracic sarcoma patients. Body image issues, changes in mood, fear of recurrence, and living with uncertainty were important mental health issues for both subgroups. Social issues in both groups included challenges in work and relationships, financial difficulties, loss of independence, and limitations in social activities. The identified physical, mental, and social health challenges can significantly impact thoracic and breast sarcoma patients' HRQoL. Results of this qualitative study will guide personalised supportive care for breast and thoracic sarcoma patients and help in determining the best possible HRQoL measurement strategy for sarcoma patients with different primary sarcoma locations.

Exploring Mentorship as a Novel Approach to Improving Quality of Life in Sarcoma Survivors: A Qualitative Pilot Study.

BACKGROUNDS: To investigate whether a formal mentoring program involving mentors from the business community could improve the quality of life (QoL) of sarcoma survivors struggling with the late effects of treatment. METHODS: Seven former sarcoma patients participated in an eight-month formal mentoring program. The program was assessed through a qualitative study involving a phenomenological approach that utilized a hermeneutical design. In-depth, semistructured interviews were conducted with the mentees after the intervention and six months later. The mentors were interviewed after the program was over. The gathered data were interpreted using a thematic analysis. RESULTS: The program facilitated dialogue between the mentors and mentees as well as between the mentees. Afterwards, the mentees were more willing to accept the challenges they faced following cancer treatment. During the program, the mentees were pushed out of their comfort zone, which led to mastery and personal growth in them all. However, the program also revealed some additional challenges, including unfulfilled expectations in two mentor-mentee relationships. CONCLUSIONS: The mentoring program facilitated the mentees' reorientation and enhanced their QoL. Its eight-month duration appeared important in terms of allowing the mentees to go through a long-lasting process with continued support. The program could serve as the basis for larger studies involving other cancer survivors.

Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescent and Young Adult Cancer Survivors? A Mixed-Methods Pilot Study.

BACKGROUND: We report on a pilot intervention study exploring the efficacy of the Lightning Process® training programme for reducing chronic fatigue and improving health-related quality of life in cancer survivors. METHODS: 13 adolescent and young adult cancer survivors previously treated for sarcoma or Hodgkin lymphoma were enrolled. A mixed-methods approach was applied. This involved the use of five validated patient-reported outcome measure (PROM) questionnaires at baseline and the three- and six-month follow-up points to obtain quantitative data. Semi-structured interviews were conducted after the intervention with emphasis on the participants' experiences and outcomes. A reflexive thematic analysis was applied to the transcripts. RESULTS: A significant reduction (p < 0.001) in the total fatigue score from baseline to the three- and six-month follow-up points was documented. The correlation coefficients between the various PROMs at baseline and the six-month follow-up point indicated considerable overlap between the measures. The qualitative findings of the interviews corresponded well with the PROM findings. Most participants experienced both less fatigue and explicit improvement in their energy level. The aspects of the intervention found to be particularly helpful were the theoretical rationale and the coping techniques mediated. CONCLUSION: These encouraging results here reported should be of interest to the general oncological community, although they require confirmation through a larger and controlled study.

Striving towards Normality in Daily Life: A Qualitative Study of Patients Living with Metastatic Gastrointestinal Stromal Tumour in Long-Term Clinical Remission.

BACKGROUND: This study explored how patients with metastatic gastrointestinal stromal tumour (GIST) experience the psychosocial challenges associated with their disease and its treatment, as well as how that experience influenced their practical, relational, vocational, and existential life. METHODS: This qualitative study has an explorative design and applied a phenomenological and hermeneutical approach. We conducted in-depth, semistructured interviews with 20 patients with metastatic GIST in long-term clinical remission. The gathered data were interpreted using a thematic analysis. RESULTS: Living with metastatic GIST, as well as the side effects of the required medication, led to changes that limited the participants' daily life. They expressed how tiredness, impaired memory, and physical challenges were among the detrimental impacts of the disease on their family life, vocational life, social life, and leisure time. Adjustments were necessary to ensure they had sufficient energy to cope with the practical and relational aspects of everyday life. Feelings of uncertainty stemming from drug resistance, disease progression, and the possibility of early death were also experienced as challenging. Half the participants stated that it was difficult to keep negative mental health issues at bay, and all of them considered the time spent waiting for their scheduled follow-up scan to be burdensome. CONCLUSIONS: It is important to focus increased attention on how the daily practical and psychosocial life of patients with chronic cancer, including metastatic GIST, is affected by their disease. Doing so might provide health-care workers with clues regarding how best to guide and support such patients throughout their emotional journey and, therefore, to improve their quality of life. As new medical treatments can also prolong survival and induce long-term clinical remission in relation to several other forms of metastatic cancer, the findings concerning GIST reported in this study might have widespread implications.

Use of a simple form to facilitate communication on long-term consequences of treatment in sarcoma survivors.

BACKGROUND: To report on our experience using a simple optional form to facilitate communication on late effects between the patients and the oncologists during outpatient follow-up and to detail on the spectrum of challenges reported by sarcoma survivors. METHODS: The form was presented for the patients to complete before their consultation and covered topics related to late effects and unmet needs that the patient wished to discuss with the medical personnel. Logistic regression analysis examined how the distribution of the topics varied with age, gender, diagnosis and type of treatment received. RESULTS: The form was manageable in a busy outpatient clinic. Of the 265 patients that received the form, 236 (89%) returned it. Patients in a palliative setting and those with other diagnosis than bone sarcoma (BS) and soft-tissue sarcoma (STS) were excluded for subsequent analyses. The final study-cohort comprised 160 patients, 54 (34%) with BS and 106 (66%) with STS. Among these, 140 (88%) had late-effect topics they wanted to discuss with their oncologist. Fatigue was raised by 39% of the patients, pain by 29% and impaired mobility by 23%. BS patients raised fatigue more often (P < 0.005) than those with STS. Patients who had undergone multimodal treatment with chemotherapy raised fatigue more frequently (P < 0.001) than those who had only undergone surgery, radiotherapy or both. CONCLUSIONS: A simple form on the long-term consequences of sarcoma treatment achieved a high response rate, was feasible to use in an outpatient clinic and facilitated communication on these issues. Fatigue was the most frequent topic raised and it was raised significantly more often in patients who had undergone chemotherapy.

Identifying bone sarcoma survivors facing psychosocial challenges. A study of trajectories following treatment.

OBJECTIVE: Bone sarcoma survivors face a number of physical and psychosocial challenges in relation to the late effects they experience following treatment. The present study aimed to identify and explore the different trajectories that bone sarcoma survivors might navigate during follow-up. METHODS: In-depth and semi-structured interviews were conducted, and an inductive thematic analysis was performed. RESULTS: When they were interviewed three to ten years after the primary diagnosis, the eighteen bone cancer survivors were found to be in three different rehabilitation phases that followed fairly distinct trajectories, namely, back to normal, a new normal and still struggling. Only three participants felt that they had returned to a life that was quite similar to the one they had lived prior to having cancer. Fifteen participants considered their lives and their bodies to be significantly altered. CONCLUSION: Sarcoma survivors who undergo life-changing treatment and return to very different lives than they had before should be identified by healthcare professionals and guided through this demanding phase to better cope with their new living conditions. Information on and tailored guidance related to psychosocial challenges may be of particular importance. Active focus on reorientation, as well as possibilities for growth, seems to be important.

Perspectives on treatment side effects in patients with metastatic gastrointestinal stromal tumour: a qualitative study.

BACKGROUND: This study aims to explore how patients with metastatic gastrointestinal stromal tumour (GIST) experience the adverse effects of treatment, as expressed by the individuals themselves. METHODS: A qualitative, phenomenological and hermeneutic design was applied. Twenty patients with metastatic GIST participated in the study. In-depth and semi-structured interviews were conducted and then analysed by means of an inductive thematic analysis. RESULTS: The majority of participants reported experiencing a changed life after being diagnosed with metastatic GIST and commencing systemic medical treatment. More than half of them described partially debilitating self-reported side effects and complaints that had a detrimental impact on their lives. The life-prolonging tyrosine kinase inhibitor treatment prompted the participants to adapt to 'a new normal'. Several participants also emphasised having an ambivalent relationship with the pill, although most looked upon it as 'a friend' because it kept them alive. Paradoxically, while the participants struggled with the side effects of treatment as well as the consequences of living with a chronic cancer, half of them considered themselves to be healthy and, thus, to not actually be cancer patients. CONCLUSIONS: We observed a gap between the biomedical perspective on disease that health professionals typically adopt and the individual experiences of patients living with metastatic GIST. For those patients who are living in limbo between having metastatic cancer and offered an effective treatment, a holistic view of health on the part of their healthcare providers seems crucial. A vital goal should hence be to improve communication between healthcare professionals and GIST patients so as to secure an individualised follow-up with guidance on coping with, and adapting to, their new normal.Trial registration The study was approved by the data protection officer of the Oslo University Hospital (Approval Number 2016/15358).

Changes in the body image of bone sarcoma survivors following surgical treatment--A qualitative study.

BACKGROUND AND OBJECTIVES: Among several long-term effects, people treated for cancer may experience an altered appearance. Our study aims to identify how visible body changes following surgical treatment affect the life and identity of primary bone sarcoma survivors 3-10 years after diagnosis. A qualitative, phenomenological, and hermeneutic design was applied. METHODS: Sarcoma survivors (n = 18) who were previously treated at Norwegian Radium Hospital, Oslo University Hospital, participated in the study. In-depth and semi-structured interviews were conducted and analyzed using inductive thematic analysis. RESULTS: The main finding of this study concerned how altered appearance after bone cancer treatment in the hip/pelvis or lower extremities affected the participants' self-esteem. Half of the participants expressed concerns about their visible differences, particularly those with functional impairment. They felt that it is important to hide the bodily signs of changes to appear as normal as possible, as well as attractive and healthy. They describe, with specific examples, how these changes influence their self-realization, especially their social life. CONCLUSIONS: Healthcare providers who guide bone sarcoma survivors during follow-up should develop a comprehensive understanding of what it means to cope with a changed and challenging body.

Negative and Positive Consequences of Cancer Treatment Experienced by Long-term Osteosarcoma Survivors: A Qualitative Study.

BACKGROUND: Our study aimed to explore how survivors of osteosarcoma of the lower extremity experience physical and psychosocial late effects several years after undergoing arduous treatment. A qualitative, phenomenological and hermeneutic approach was applied. MATERIALS AND METHODS: Osteosarcoma survivors (n=8) previously treated at the Norwegian Radium Hospital, Oslo University Hospital, participated in the study. In-depth and semi-structured interviews were conducted. The interviews were analyzed using inductive thematic analysis. RESULTS: Three to ten years after diagnosis, the majority of participants had experienced both negative and positive consequences following treatment. Changes in activity and exclusion from participation in different areas were the most challenging consequences. Several of their experiences are similar to those described by people with disabilities. CONCLUSION: It is important to understand osteosarcoma survivors' own experiences in order to assist those who struggle to reorient in life and to construct a new identity for themselves.

Cured of primary bone cancer, but at what cost: a qualitative study of functional impairment and lost opportunities.

Purpose. Our study aims to explore how former cancer patients experience physical and psychosocial late effects 3-7 years after they underwent treatment for primary bone sarcoma in the hip/pelvic region. A qualitative, phenomenological, and hermeneutic design was applied. Methods. Sarcoma survivors (n = 10) previously treated at Oslo University Hospital, Norwegian Radium Hospital were selected to participate. In-depth and semistructured interviews were conducted. The interviews were analysed using inductive thematic analysis. Results. The participants reported that the late effects had three core spheres of impact: "their current daily life," "their future opportunities," and "their identity." They expressed negative changes in activity, increased dependence on others, and exclusion from participation in different areas. Their daily life, work, sports activities, and social life were all affected. Several of their experiences are similar to those described by people with functional impairment or disability. Conclusion. Patients cured of bone cancer in the hip/pelvic region pay a significant price in terms of functional impairment, practical challenges, exclusion from important aspects of life, and loss of previous identity. It is important to appreciate this in order to help bone cancer survivors who struggle to reorient their life and build a secure new identity.