Feasibility and effectiveness of communication tools for addressing intimacy and sexuality in patients with cancer: a systematic review.

PURPOSE: Patients diagnosed with cancer might experience changes in intimacy and sexuality due to the illness itself, treatment, or psychological and social factors. Healthcare professionals (HCPs) often feel reluctant to discuss these changes. This study aimed to provide an overview of the feasibility and effectiveness of communication tools that support communication regarding changes in intimacy or sexuality among patients with cancer. METHODS: This is a systematic review. Databases are PubMed, Embase, CINAHL, PsycInfo, Web of Science and Cochrane Library from inception to June 2023. The Mixed Methods Appraisal Tool was used to assess included studies. Data were summarized in data charting forms. RESULTS: In total 35 studies were included, published between 2001 and 2023. Most had a quantitative design and moderate methodological quality. In 11 studies, the PLISSIT model (Permission, Limited Information, Specific Suggestions, Intensive Therapy) was used. Tools were integrated in counselling sessions or training programmes for individual patients, couples, groups of patients, or HCPs. All tools were considered feasible by patients or HCPs. Twenty studies reported significant improvement in sexual functioning, quality of life, quality of care or combined outcomes. CONCLUSION: Tools to support communication about changes in intimacy and sexuality among patients with cancer seem feasible and effective. The most commonly used tool, the PLISSIT model, proved to be feasible for HCPs and to have a positive effect on patients' and partners' sexual functioning and quality of life. Giving attention to changes in intimacy and sexuality seems to be important in itself, regardless of the communication tool or approach used.

A randomized controlled trial on the efficacy of life review therapy targeting incurably ill cancer patients: do their informal caregivers benefit?

PURPOSE: Investigate whether Life Review Therapy and Memory Specificity Training (LRT-MST) targeting incurably ill cancer patients may also have a beneficial effect on caregiving burden, symptoms of anxiety and depression, and posttraumatic growth of the informal caregivers. METHODS: Data was collected in the context of a randomized controlled trial (RCT) (secondary analyses) on the effect of LRT-MST among incurably cancer patients. Informal caregivers of participating patients were asked to complete outcome measures at baseline (T0), post-intervention (T1), and 1-month follow-up (T2): caregiver burden (caregivers reaction assessment scale (CRA)), symptoms of anxiety and depression (hospital anxiety and depression scale), and posttraumatic growth (posttraumatic growth inventory). Linear mixed models (intention to treat) were used to assess group differences in changes over time. Effect size and independent samples t tests were used to assess group differences at T1 and T2. RESULTS: In total, 64 caregivers participated. At baseline, 56% of the caregivers experienced anxiety and 30% depression. No significant effect was found on these symptoms nor on posttraumatic growth or most aspects of caregiver burden. There was a significant effect of LRT-MST on the course of self-esteem (subscale CRA) (p = 0.013). Effect size was moderate post-intervention (ES = - 0.38, p = 0.23) and at 3-month follow-up (ES = 0.53, p = 0.083). CONCLUSIONS: Many caregivers of incurably ill cancer patients experience symptoms of anxiety and depression. LRT-MST does not improve symptoms of depression and anxiety, negative aspects of caregiver burden, or posttraumatic growth. LRT-MST may have a protective effect on self-esteem of informal caregivers (positive aspect of caregiver burden). TRIAL REGISTRATION NUMBER: Netherlands Trial Register (NTR 2256), registered on 23-3-2010.

A novel allogeneic off-the-shelf dendritic cell vaccine for post-remission treatment of elderly patients with acute myeloid leukemia.

In elderly acute myeloid leukemia (AML) patients post-remission treatment options are associated with high comorbidity rates and poor survival. Dendritic cell (DC)-based immunotherapy is a promising alternative treatment strategy. A novel allogeneic DC vaccine, DCP-001, was developed from an AML-derived cell line that uniquely combines the positive features of allogeneic DC vaccines and expression of multi-leukemia-associated antigens. Here, we present data from a phase I study conducted with DCP-001 in 12 advanced-stage elderly AML patients. Patients enrolled were in complete remission (CR1/CR2) (n = 5) or had smoldering disease (n = 7). All patients were at high risk of relapse and ineligible for post-remission intensification therapies. A standard 3 + 3 dose escalation design with extension to six patients in the highest dose was performed. Patients received four biweekly intradermal DCP-001 injections at different dose levels (10, 25, and 50 million cells DCP-001) and were monitored for clinical and immunological responses. Primary objectives of the study (feasibility and safety) were achieved with 10/12 patients completing the vaccination program. Treatment was well tolerated. A clear-cut distinction between patients with and without detectable circulating leukemic blasts during the vaccination period was noted. Patients with no circulating blasts showed an unusually prolonged survival [median overall survival 36 months (range 7-63) from the start of vaccination] whereas patients with circulating blasts, died within 6 months. Long-term survival was correlated with maintained T cell levels and induction of multi-functional immune responses. It is concluded that DCP-001 in elderly AML patients is safe, feasible and generates both cellular and humoral immune responses.

Prevalence and associated factors of medication non-adherence in hematological-oncological patients in their home situation.

BACKGROUND: Medication non-adherence is associated with poor health outcomes and increased health care costs. Depending on definitions, reported non-adherence rates in cancer patients ranges between 16 and 100%, which illustrates a serious problem. In malignancy, non-adherence reduces chances of achievement of treatment response and may thereby lead to progression or even relapse. Except for Chronic Myeloid Leukemia (CML), the extent of non-adherence has not been investigated in hematological-oncological patients in an outpatient setting. In order to explore ways to optimize cancer treatment results, this study aimed to assess the prevalence of self-administered medication non-adherence and to identify potential associated factors in hematological-oncological patients in their home situation. METHODS: This is an exploratory cross-sectional study, carried out at the outpatient clinic of the Department of Hematology at the VU University medical center, Amsterdam, the Netherlands between February and April 2014. Hematological-oncological outpatients were sent questionnaires retrieving information on patient characteristics, medication adherence, beliefs about medication, anxiety, depression, coping, and quality of life. We performed uni- and multivariable analysis to identify predictors for medication non-adherence. RESULTS: In total, 472 participants were approached of which 259 (55%) completed the questionnaire and met eligibility criteria. Prevalence of adherence in this group (140 male; 54,1%; median age 60 (18-91)) was 50%. In univariate analysis, (lower) age, (higher) education level, living alone, working, perception of receiving insufficient social support, use of bisphosphonates, depression, helplessness (ICQ), global health, role function, emotional function, cognitive function, social functioning, fatigue, dyspnea, diarrhea were found to be significantly related (p = <0.20) to medication non-adherence. In multivariable analysis, younger age, (higher) education level and fatigue remained significantly related (p = <0.10) to medication non-adherence. CONCLUSIONS: This cross-sectional study shows that 50% of the participants were non-adherent. Lower age, living alone and perception of insufficient social support were associated factors of non-adherence in hematological-oncological adult patients in their home-situation.

Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer: an online focus group study among nurses.

BACKGROUND: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. METHODS: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. RESULTS: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. CONCLUSIONS: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers.

Perceived need for information of patients with haematological malignancies: a literature review.

AIMS AND OBJECTIVES: To provide insight into the perceived need for information of patients with haematological malignancies. BACKGROUND: Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start promptly, with little time to inform patients. DESIGN: Literature review. METHODS: A comprehensive literature search was conducted from all available literature to May 2013 in the databases: Cumulative Index to Nursing and Allied Health Literature, PsycINFO and PubMed (Medline). Relevant studies were reviewed regarding the perceived need for information on various topics, sources of information and satisfaction with information provided. RESULTS: The initial search revealed 215 articles, fourteen of which were relevant. Patients need basic information on the disease (diagnosis and diagnostics), treatment (various treatment options, side effects and duration), prognosis (curability and prolonging life) and all other topics (recovery, self-care and psychosocial functioning). Need for detailed information varied between studies. Patients expressed a higher need for medical than for psychosocial information. Patients preferred to receive information from their doctors the most, followed by nurses. Most studies described patients' satisfaction with the information provided. CONCLUSION: Based on the limited number of data available, medical information is for patients of higher priority compared to psychosocial information. Patients need basic information on diagnosis, treatment, prognosis and all other topics. Need for detailed information varied between studies. Patients were satisfied with the provided information, preferably offered by doctors and nurses. RELEVANCE TO CLINICAL PRACTICE: The perceived need for information and satisfaction with the information provided differs strongly between patients. In clinical practice, more attention is needed for information tailored to the patient, taking into account important moderating factors such as age, type of cancer, time since diagnosis, treatment modality and coping style.

Fertility and sexual function in female Hodgkin lymphoma survivors of reproductive age.

AIMS AND OBJECTIVES: To assess the perceived fertility status and to determine the association between perceived fertility status and sexual function, as reported by young female Hodgkin lymphoma survivors. BACKGROUND: Young female Hodgkin lymphoma survivors are at risk of infertility and impaired sexual function. However, little is known about their awareness of infertility and its association with sexual functioning. DESIGN: A descriptive questionnaire survey. METHODS: In this cross-sectional study, a survey was completed by female Hodgkin lymphoma survivors (< 40 years). Outcome measures included self-reported fertility status and sexual problems and the internationally validated Female Sexual Function Index. RESULTS: In total, 36 survivors were included (mean age 32 years, SD 4). Eighteen women (50%) thought themselves fertile. Eight survivors (22%) who perceived themselves as being infertile were more often treated with alkylator-based chemotherapy, and 63% reported sexual dysfunction. Ten survivors (28%) were not aware as to whether they were fertile or not; seven of these would like to have children. The reported fertility status was related to age and chemotherapy regimen. Regarding sexuality, 14 (39%) of the female Hodgkin lymphoma survivors reported one or more sexual problem and none reported recovery. Female sexual dysfunction according to the Female Sexual Function Index was reported by 11 (31%) survivors. CONCLUSION: Almost 30% of Hodgkin lymphoma survivors do not know whether they are fertile or not. Overall sexual dysfunction is common in Hodgkin lymphoma survivors and comparable to the general population. However, a lack of desire was significantly more often reported in female Hodgkin lymphoma survivors. RELEVANCE TO CLINICAL PRACTICE: To prevent assumed infertility and unintended childlessness by postponing parenthood in young female survivors, awareness of fertility status is needed. There is also a need to routinely assess sexual function and provide adequate interventions to improve arousal and lubrication problems.

Self-Reported Sexual Function in Sexually Active Male Hodgkin Lymphoma Survivors.

INTRODUCTION: Unambiguous data on sexual dysfunction after Hodgkin lymphoma (HL) treatment are scarce. AIMS: To form a baseline in this area, we compared patient-reported sexual function in sexually active male HL survivors in complete remission with a sexually active, age-matched, male Dutch sample population. Furthermore, we explored whether sociodemographic and clinical factors were associated with sexual dysfunction in HL survivors and investigated whether reporting to perceive sexual problems was indicative for sexual dysfunction. METHODS: This cross-sectional study included male patients with HL who were treated with chemotherapy and age-matched sexually active males. MAIN OUTCOME MEASURES: Outcome measures included the internationally validated International Index of Erectile Function (IIEF) and self-reported sexual problems by adding 3 items to the study-specific questionnaire. RESULTS: Erectile dysfunction (ED) occurred in 23.3% of the HL survivors vs in 23.0% of controls: respectively 13.3% and 12.3% had moderate to severe ED. However, more HL survivors positively answered the question whether they did perceive sexual problems than controls (20.0% vs 7.0%; P = .087). More patients treated with bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procabazine, and prednisone (BEACOPP) had sexual problems 33.3% vs 8.3% who were treated with doxorubicin, bleomycin, vinblastine, and dacarbazine (P = .057). Importantly, we found that the mean IIEF score for erectile function was 15.7 in HL survivors who reported to perceive sexual problems (moderate ED) vs 28.3 (normal) in those without perceiving sexual problems. CONCLUSION: In general, sexual function of male HL survivors is comparable to that of matched normal controls. Perceiving sexual problems was associated with lower sexual function measured by the IIEF. None of the HL survivors who were treated with doxorubicin, bleomycin, vinblastine, and dacarbazine perceived sexual problems. However, one-third of HL survivors who were treated with BEACOPP did, including ED in one-third of the cases. This is an important consideration for daily clinical practice as BEACOPP is increasingly used as standard therapy in advanced-stage HL. Eeltink CM, Lissenberg-Witte BI, Incrocci L, et al. Self-Reported Sexual Function in Sexually Active Male Hodgkin Lymphoma Survivors. Sex Med 2020;8:428-435.

A nurse-led self-management support intervention for patients and informal caregivers facing incurable cancer: A feasibility study from the perspective of nurses.

PURPOSE: Investigation of the feasibility of recruitment through nurses of patients with incurable cancer, and the feasibility (adoption, usage) and nurses' evaluation of a nurse-led self-management support intervention, integrated in continuity home visits and based on the 5 A's Behavior Change Model. METHOD: Questionnaire, registrations, evaluation forms, and interviews. RESULTS: Recruitment was complicated; many patients were ineligible for participation, nurses appeared protective of their patients (gatekeeping), and recruitment during the first continuity home visit appeared to be a barrier as a lot of other issues had to be discussed. The adoption rate was 81%, meaning that 18 out of 22 nurses recruited were willing to use the intervention. The usage rate at the nurse level was 56%, meaning that 10 nurses applied the intervention in full (having applied all five A's) in at least one patient. Nurses used the intervention in full in 21 out of the 36 patients included, implying a usage rate at the patient level of 58%. Nurses' mean general satisfaction score for the intervention was 7.57 (range 0-10). Nurse were especially positive about the 5 A's model, and considered the continuity home visits to be an appropriate setting for the intervention. CONCLUSIONS: Timing of recruitment and gatekeeping complicated recruitment of patients through nurses. Although nurses were positive about the intervention, nurses often did not fully apply the intervention. To improve its usage, it is suggested that nurses should first be trained in using the 5 A's model.

Immune mediated autologous cytotoxicity against hematopoietic precursor cells in patients with myelodysplastic syndrome.

BACKGROUND: An activated immune system has been observed in patients with myelodysplastic syndrome but its exact contribution to disease development and control is not fully clarified. On the one hand an activated and skewed T-cell repertoire has been reported, but on the other hand, decreased natural killer cell function has been found. Immune activation could reflect undesired autoimmune reactions against normal hematopoietic precursor cells as well as effective immune-surveillance against dysplastic clones. DESIGN AND METHODS: We have investigated immune effector cells (lymphocyte subsets, lymphocyte activation markers, and natural killer cells) of 40 low and intermediate risk myelodysplastic syndrome patients and compared them to those of 10 age-matched healthy donors. Furthermore, we have analyzed the cytotoxic capacity of effector cells against autologous bone marrow hematopoietic precursor cells of 8 myelodysplastic syndrome patients and 2 healthy donors. RESULTS: In myelodysplastic syndrome patients, we have found an activated state of lymphocytes, determined by increased percentages of effector T cells with cytotoxic profile, more skewing of the T-cell receptor Vbeta (TCR-Vbeta) repertoire, and decreased frequencies of regulatory T cells, when compared to healthy donors. The percentage of natural killer cells did not differ between myelodysplastic syndrome patients and healthy donors, but natural killer cells of myelodysplastic syndrome patients expressed increased levels of granzyme B. Finally, we have demonstrated non-MHC restricted autologous cytotoxicity up to 90% against aberrant hematopoietic precursor cells, presumably mediated by natural killer cells. CONCLUSIONS: Our data point to a role for active immune-surveillance in myelodysplastic syndrome, as demonstrated by activated T cells and TCR-Vss skewing. Autologous cytotoxicity against hematopoietic precursor cells was natural killer cell dependent, which points to an additional role for the innate immune system in immune-surveillance of myelodysplastic syndrome patients.

Recommended patient information sheet on the impact of haematopoietic cell transplantation on sexual functioning and sexuality.

Sexual concerns are common after haematopoietic cell transplantation (HCT). Exposure to total body irradiation (TBI), alkylating agent and graft versus host disease (GvHD) can all affect sexual function, leading to problems in sexual desire, arousal and the orgasm phase of the sexual response cycle. In high-risk haematological malignancies, such as acute leukaemia and myelodysplastic syndromes, HCT often offers the highest chance for long-term survival. In addition, these haematological diseases and HCT can have an impact on body image, self-esteem, (sexual) relationship and psychosocial factors, all of which are able to affect sexuality and sexual function. Five years post HCT, 80% of the female survivors and 46% of the male survivors report sexual dysfunction. It has been shown that these patients cope better after having discussed sexual health. While healthcare providers (HCPs) have the responsibility to address sexual issues, it has been demonstrated that 48%-82% HCT recipients reported not having discussed sexual issues with their HCPs and that only one-third of the HCPs routinely discussed sexual issues with their patients. HCPs describe a lack of knowledge and being uncomfortable with the topic as the most important reasons for not addressing sexual functioning. Even so, it would help >90% HCPs if the patient initiated discussing sexual issues. However, to empower patients addressing sexual issues, adequate comprehensive patient information is needed. In an effort to better meet the patients' need, a patient information sheet: 'Information for patients undergoing Hematopoietic Cell Transplantation: the impact of the disease and treatment on sexual function and sexuality', has been created. In this review, we describe what is known about the impact of HCT on sexual function and briefly the management of sexual problems.

Health-care professionals' perspective on discussing sexual issues in adult patients after haematopoietic cell transplantation.

The majority of adult patients have sexual concerns after post-haematopoietic cell transplantation. Even so, health-care professionals (HCP) do not routinely discuss these problems. We, therefore, surveyed all the members of the European Society for Blood and Marrow Transplantation to evaluate the barriers and facilitators to discussing sexual issues. The 73-item web-survey was completed by 166 registered nurses (RNs) and 126 medical doctors (MDs). Sixty-eight percent reported that they seldom discussed sexual issues. Younger MDs (p < 0.001) and those who work in non-western European countries (p = 0.003), RNs with probably less sexual education themselves (p = 0.002), MDs and RNs who have limited knowledge about sexual complications (p < 0.001) and MDs and RNs who feel uncomfortable discussing sexual issues (p < 0.001) are all less likely to discuss these matters. The major perceived barriers were that patients might be embarrassed if sexual issues were discussed in the presence of a relative (60% RNs, 67% MDs) and that professionals prefer patients to raise sexual issues themselves (54% RNs, 44% MDs). The most important perceived facilitator was for the patient to initiate discussion (≥ 90% for RNs and MDs). Overall, haematopoietic cell transplantation survivors may not be receiving the support on sexual issues they probably need.

The efficacy of Life Review Therapy combined with Memory Specificity Training (LRT-MST) targeting cancer patients in palliative care: A randomized controlled trial.

BACKGROUND: The aim of this study was to evaluate the efficacy of an intervention combining Life Review Therapy (LRT) and Memory Specificity Training (MST) (LRT-MST) to improve ego-integrity and despair among cancer patients in palliative care. METHODS: In this multicentre randomized controlled trial, cancer patients in palliative care were randomized to the intervention group (LRT-MST; n = 55) or waiting-list control group (n = 52). LRT-MST is a 4-session home-based psychological intervention that aims to retrieve specific positive memories, to re-evaluate life events and to reconstruct the story of a patient's life, including the diagnosis of incurable cancer. Outcome measures were ego-integrity and despair (NEIS), psychological distress, anxiety and depression (HADS), quality of life (EORTC QLQ-C15-PAL), and specificity of the autobiographical memory (AMT). NEIS, HADS and EORTC QLQ-C15-PAL were assessed at baseline (T0), 1 month later (post-treatment; T1), and at 1 month follow-up (T2). AMT was assessed at T0 and T1. Linear mixed models (intention to treat) were used to assess group differences in changes over time. Independent samples t-tests were used to assess group differences at T0, T1, and T2, and effect sizes (ES) were calculated at T1 and T2. RESULTS: The course of ego-integrity (not despair) improved significantly over time (p = .007) in the intervention group compared to the waiting-list control group, with moderate, but insignificant, effect sizes at T1 (ES = .42) and T2 (ES = .48). Compliance rate was 69% and total dropout rate was 28%, both primarily related to disease progression and death. CONCLUSIONS: LRT-MST seems effective among cancer patients in palliative care to improve the course of ego-integrity.

Analysis of efficacy and prognostic factors of lenalidomide treatment as part of a Dutch compassionate use program.

BACKGROUND AND METHODS: To obtain efficacy and safety data on lenalidomide treatment outside of clinical trials, we analyzed the clinical data of 114 patients with refractory or relapsed multiple myeloma treated with lenalidomide on a compassionate use basis. The recommended treatment consisted of lenalidomide 25 mg given on days 1-21 of a 28-day cycle, in combination with dexamethasone. A median of 3 previous lines of therapy were given, including thalidomide in 91%. Most patients were treated until progression or intolerable toxicity. RESULTS: The median number of cycles was 7 (range, 1-21+ cycles) with a maximum response after a median of 3 cycles (range, 1-10 cycles). The overall response rate was 69%, including complete response in 6%, very good partial response in 19%, and partial response in 44%. The response rate was not influenced by previous thalidomide and/or bortezomib treatment. The median time to progression (TTP) was 9 months and the median overall survival (OS) was 22 months. A significantly longer TTP was observed in patients who previously underwent allogeneic stem cell transplantation (12.5 months vs. 8 months; P = .036). Overall survival was significantly affected by performance status (P < .0001). Lenalidomide toxicity was predominantly hematologic (37%; Common Toxicity Criteria > or = 3) and the incidence of venous thrombotic events was low (5%) using the recommended prophylaxis. CONCLUSION: This analysis confirms that, outside clinical prospective trials, treatment with lenalidomide is highly effective and feasible in heavily pretreated patients with multiple myeloma.