Psychoneuroimmunology in multiple myeloma and autologous hematopoietic stem cell transplant: Opportunities for research among patients and caregivers.

Multiple myeloma (MM) is an incurable cancer and is the leading indication for autologous hematopoietic stem cell transplantation (HSCT). To be eligible for HSCT, a patient must have a caregiver, as caregivers play a central role in HSCT preparation and recovery. MM patients remain on treatment indefinitely, and thus patients and their caregivers face long-term challenges including the intensity of HSCT and perpetual therapy after transplant. Importantly, both patients and their caregivers show heightened depressive and anxiety symptoms, with dyadic correspondence evidenced and caregivers' distress often exceeding that of patients. An extensive psychoneuroimmunology (PNI) literature links distress with health via immune and neuroendocrine dysregulation as well as biological aging. However, data on PNI in the context of multiple myeloma - in patients or caregivers - are remarkably limited. Distress in MM patients has been associated with poorer outcomes including higher inflammation, greater one year post-HSCT hospital readmissions, and worse overall survival. Further, anxiety and depression are linked to biological aging and may contribute to the poor long-term health of both patients and caregivers. Because MM generally affects older adults, individual differences in biological aging may represent an important modifier of MM biology and HSCT treatment outcomes. There are a number of clinical scenarios in which biologically younger people could be prescribed more intensive therapies, with potential for greater benefit, by using a personalized cancer therapy approach based on the quantification of physiologic reserve. Further, despite considerable psychological demands, the effects of distress on health among MM caregivers is largely unexamined. Within this context, the current critical review highlights gaps in knowledge at the intersection of HSCT, inflammation, and biological aging in the context of MM. Research in this area hold promise for opportunities for novel and impactful psychoneuroimmunology (PNI) research to enhance health outcomes, quality of life, and longevity among both MM patients and their caregivers.

Patients' experiences of living with multiple myeloma.

BACKGROUND: Multiple myeloma is a B-cell haematological malignancy characterised by uncontrolled plasma cell proliferation. Patients with the disease often undergo periods of remission followed by multiple relapses. Understanding patients' experience of living with this chronic condition is key to providing effective patient-centred care. AIMS: This qualitative descriptive study explored the experiences of patients living with multiple myeloma. METHODS: A purposive sample of 6 patients was used. Data were collected using in-depth unstructured interviews and analysed using Colaizzi's (1978) thematic framework. FINDINGS: The emergent themes included: information and communication; treatment and symptom burden; the importance of support from family/friends and professional help; psychosocial elements of survivorship. CONCLUSION: The complex symptoms of multiple myeloma need to be treated holistically to manage the unpredictable nature of this disease.

Living with relapsed myeloma: Symptoms and self-care strategies.

AIMS AND OBJECTIVES: To explore which symptoms relapsed myeloma patients experience and what self-care strategies are used. METHODS: This was a qualitative study utilising focus group interviews (n = 4) with relapsed myeloma patients (n = 15) and carers (n = 9). The focus groups were analysed and guided by thematic analysis. RESULTS: Three major themes with subthemes were identified following analysis of the interview data: "difficult symptoms; "self-care" and "feeling vulnerable." These findings indicate the challenges relapsed myeloma patients experience with ongoing symptoms and highlight the importance of continuity of care. CONCLUSIONS: Symptom management for myeloma patients remains complex due to the array of treatments given. These patients require holistic care and thorough regular assessments to help them cope with the adverse effects on their physical and psychological health. For patients with a long-term diagnosis of myeloma, self-management workshops and regular education sessions may be of benefit. RELEVANCE TO CLINICAL PRACTICE: This study highlights the key role of healthcare professionals in going beyond assessment of symptoms to offering advice and support to assist relapsed myeloma patients in managing their symptoms.

Self-Reported Quality of Life and Symptom Burden in Ambulatory Patients With Multiple Myeloma on Disease-Modifying Treatment.

BACKGROUND: Knowledge of health-related quality of life (QoL) of patients with multiple myeloma on disease-modifying treatments is limited. AIM: (1) Determine symptom prevalence in patients with multiple myeloma on disease-modifying treatment. Identify the range and nature of these symptoms within the dimensions of physical, psychological, social, and financial well-being. (2) Measure self-reported QoL. (3) Compare the above-mentioned parameters to the general population and patients with advanced cancer. METHOD: Adults with multiple myeloma on disease-modifying treatment, attending the hematology day unit in a tertiary referral center from November 2012 to January 2013, were eligible for inclusion in a cross-sectional quantitative survey. Consenting patients completed 2 validated questionnaires, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented by the myeloma-specific module (EORTC QLQ-MY20) and the Hospital Anxiety Depression Score (HADS). RESULTS: Forty-one patients were included for analysis: 59% were male and 41% were female. Mean age was 63.7 years (range 46-86, standard deviation 11.24). The QoL scores were significantly lower than the general population and comparable to those with advanced cancer. The most commonly reported physical symptoms were pain (66%), fatigue (63%), and dyspnea (51%). About 54% of the patients were burdened by financial worries. Anxiety (30%) and depression (37%) were prevalent. CONCLUSION: Patients with myeloma on disease-modifying treatment have a lower QoL than the general population and are symptomatic across physical, psychological, financial, and social domains. A holistic approach to patient care is warranted, and patients may benefit from specialist palliative care input.

Psychological screening of onco-hematologic inpatients: Distress Thermometer administration.

PURPOSE: The screening of psychological distress is a milestone in psycho-oncology. The National Comprehensive Cancer Network has established clinical guidelines for detecting and managing it and the Distress Thermometer (DT) was the recommended tool for the screening. Although its utility for oncologic patients has been reported frequently in the literature, less is known about hematologic patients. The present study involves a sample of onco-hematologic adult patients. METHODS: In the current study, we proposed the Distress Thermometer and the Problem List in a sample of hematologic inpatients at Ca' Foncello Hospital, Treviso, Italy. We evaluated 102 patients, 61% male and 39% female, median age 59 years (range 18-78). Enrolled patients had acute leukemia (31%), multiple myeloma (31%), or lymphoma (31%). RESULTS: A total of 41.6% of the patients presented psychological distress, and the DT score was associated with neither sex nor diagnosis. The psychological distress was mild in 21.8%, moderate in 13.8%, and severe in 12.9% of the patients. CONCLUSIONS: Our results were consistent with previous results regarding the validation process of DT in a large sample of Italian cancer patients.

Holistic needs assessment in advanced, intensively treated multiple myeloma patients.

PURPOSE: It is recommended that patients with multiple myeloma should be assessed for unmet holistic needs at key times in their disease trajectory. The aim of this exploratory study was to characterise the holistic needs of advanced, intensively treated multiple myeloma using a structured assessment tool. METHODS: Patients with multiple myeloma who had undergone a haematopoietic stem cell transplantation and subsequent treatment for at least one episode of progressive disease but were in stable plateau phase were included in the study. Patients' holistic needs were assessed using the self-reporting tool, Sheffield Profile for Assessment and Referral for Care (SPARC). RESULTS: Thirty-two patients with a median age of 60 years at assessment and a median of 5.5 years from diagnosis were recruited. Using the SPARC, half of the patients reported tiredness as 'quite a bit/very much,' while one third complained that daytime somnolence and insomnia were 'quite a bit/very much.' Forty-four percent of patients reported pain. One third of patients were bothered and distressed by the side effects from their treatment and were worried about long-term effects of their treatment. Thirty-one percent of patients felt that the effect of their condition had an impact on their sexual life, and 40 % were worried about the effect that their illness was having on their family or other people. CONCLUSION: This is the first study to use a self-reported holistic needs assessment tool in multiple myeloma. A multidimensional structured questionnaire like the SPARC could provide a useful first step in the effective delivery of supportive and palliative care for patients with multiple myeloma.

Psychosocial support in patients with multiple myeloma at time of diagnosis: who wants what?

OBJECTIVE: The aim of this study was to examine interest in psychosocial interventions among patients with multiple myeloma at time of diagnosis as well as associated factors. METHODS: Patients with newly diagnosed multiple myeloma were recruited from our outpatient myeloma unit at the Heidelberg University Hospital. Patients completed questionnaires that included a checklist on desired psychosocial interventions and the Patient Health Questionnaire 9-item (PHQ-9) depression and Generalized Anxiety Disorder 7-item scale (GAD-7) anxiety scales. Medical data were extracted from the patients' electronic records. RESULTS: The survey was completed by 114 out of the 130 myeloma patients. Half of the patients (51%) desired psychosocial interventions. The most common preferences were relaxation techniques (21%), psychological counseling (20%), and peer support groups (18%). Approximately 24% of the patients reported symptoms of depression, and 8% reported symptoms of anxiety. Patients with symptoms of depression had twice as many preferences for psychosocial interventions as nondepressed patients. They more frequently desired individual psychotherapy (p = 0.035) and peer support groups (p = 0.015). In general, lower age was associated with greater interest in psychosocial interventions. Medical status was not strongly associated with interest in psychosocial interventions. CONCLUSIONS: A high percentage (51%) of patients with multiple myeloma has psychosocial intervention desires at the time of diagnosis. The greatest interest was found in depressed and younger patients. However, depressed patients do not prefer a single intervention form but rather show a broad variability of wishes, so 'one size does not fit all'. Therefore, to reach all patients in need, a choice of psychosocial interventions should be offered.

Impact of the treatment-free interval on health-related quality of life in patients with multiple myeloma: a UK cross-sectional survey.

BACKGROUND: While the impact of various treatments on myeloma patients' health-related quality of life (HRQL) has been reported, the impact of a treatment-free interval (TFI) is currently unclear. The aims of this study were to assess if (1) a TFI is associated with a better HRQL vs. other treatment phases and (2) the length of the TFI influences HRQL. METHODS: A cross-sectional postal survey was conducted in the UK. The survey was sent to 605 multiple myeloma patients via the charity Myeloma UK and asked patients to rate their HRQL using the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQ-C30), EORTC QLQ-MY20 and the EQ-5D. The results were analysed using ordinary least squares regression. RESULTS: Surveys of 402 (67 %) were returned; 370 (61 %) were considered eligible for analysis. Results demonstrated that being in a first TFI relative to other treatment phases and experiencing a longer TFI were significantly associated with better HRQL as assessed by various domains of the QLQ-C30, MY20 and EQ-5D. CONCLUSION: Patients enjoy better HRQL when in their first TFI, and the length of the TFI also positively impacts on HRQL This information may be important for patients and their physicians making treatment decisions and has implications for treatment protocols incorporating extended therapy.

Imagery rescripting for psychological disorder following cancer: a case study.

OBJECTIVES: Intrusive memories have been identified in cancer patients and associated with psychological distress and maladaptive adjustment. Imagery rescripting is a psychological therapy that has proved successful for reducing the impact and distress associated with intrusive memories in various populations (e.g. depression). This paper describes the first application of this technique for a cancer patient reporting intrusive memories. DESIGN: A single-case design was used to assess the stand-alone therapy. RESULTS: Imagery rescripting was associated with significant reductions in the adverse impact of intrusive memories and psychological distress and these effects remained at 3- and 6-month follow-up. CONCLUSIONS: Imagery rescripting shows promise for utility in medical patients experiencing intrusive memories.

Ethical issues in integrative oncology.

Integrative oncology relates to an emerging dialog between complementary and alternative medicine (CAM) scholars, oncologists, family practitioners, and other health care providers who envision an extended and holistic patient-centered approach to oncology care. The multiple commitments of integrative oncology to a medical humanistic approach and to a strong evidence-based foundation may impose considerable ethical concerns and dilemmas. The authors use narrative ethics to present a case study that exemplifies the ethical challenges confronting physicians and health care providers who wish to provide an integrative approach for their patients. An ethical analysis of the narrative is provided to help clarify the ethical issues and conflicts within it. Finally, a framework that may transform ethical constraints to a communication tool is proposed.