Experiences of cancer survivors with chemotherapy-induced peripheral neuropathy in the Netherlands: symptoms, daily limitations, involvement of healthcare professionals, and social support.

PURPOSE: A significant proportion of cancer patients suffer from chemotherapy-induced peripheral neuropathy (CIPN). This descriptive study aimed to examine patients' experience of CIPN symptoms, daily limitations, involvement of healthcare professionals, and social support. METHODS: Cross-sectional data have been collected in the Netherlands via a national online questionnaire comprising closed items only (February 2021). RESULTS: Out of 3752 respondents, 1975 received chemotherapy only (i.e., without targeted therapy) and were therefore included. The majority (71.2%) reported symptoms in both hands and feet (e.g., tingling and loss of sensation or diminished sensation). Participants reported most limitations in household chores, social activities, hobbies, sports, walking, and sleeping and least in family/(taking care of) children, cycling, driving, self-care, eating and drinking, and sexuality and intimacy. Many patients indicated that their healthcare professionals informed them about the possibility of CIPN development before treatment (58.4%), and they paid attention to CIPN during and after treatment (53.1%). However, many patients (43%) reported a lack of information on what to do when CIPN develops. Few participants (22%) visited their general practitioner (GP) for CIPN. In general, patients' social environments sometimes to always showed empathy to patients. CONCLUSIONS: Symptoms of CIPN are frequently reported and can result in various daily limitations. Support from professionals and peers is crucial in managing CIPN, which is sometimes lacking. Appropriate guidance and support should be provided to patients to decrease the impact of CIPN on daily life. Future research should investigate differences in chemotherapeutic agents and the resulting symptoms and consequences.

Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors.

PURPOSE: Differences in quality of life (QoL) between patients with rare and common cancer might be explained by the specific challenges patients with rare cancer face during their disease trajectory, but research is scarce. This study aimed to (1) assess the difference in QoL between patients with rare and common cancer (i.e. colorectal cancer (CRC)) and (2) examine the association between disease trajectory-related factors and QoL in patients with rare cancer. METHODS: Cross-sectional data were collected among adults with rare cancer by a nationwide online survey in the Netherlands. For comparison with patients with CRC, data from the Prospective Dutch Colorectal Cancer (PLCRC) cohort were used. Associations were assessed by linear regression analyses. RESULTS: Data from 1525 patients with rare cancer and 1047 patients with CRC were analysed. Having a rare cancer was significantly associated with a lower QoL compared to having CRC (p < 0.001). Disease trajectory-related factors significantly associated with QoL in patients with rare cancer were time until diagnosis, misdiagnoses, information on best treatment options, information on late and/or long-term effects, and both satisfaction with physician and specialized nurse care (all: p < 0.05). CONCLUSION: Patients with rare cancers have a lower self-reported QoL than patients with CRC, and several disease trajectory-related factors are associated with QoL in patients with rare cancer. IMPLICATIONS FOR CANCER SURVIVORS: To improve QoL of patients with rare cancer, appropriate guidance and support by healthcare professionals throughout the disease trajectory are needed, as well as early diagnosis and proper referral to centres of expertise.

Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions.

OBJECTIVE: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients. METHODS: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018. RESULTS: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. CONCLUSION: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.

Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey.

BACKGROUND: Patients with rare cancers face challenges in the diagnostic and treatment phase, and in access to clinical expertise. Since studies on health care experiences of these patients in comparison to patients with more common cancers are scarce, we aimed to explore these differences. METHODS: Data were cross-sectionally collected among (former) adult cancer patients through a national online survey in the Netherlands (October 2019). Descriptive statistics were reported and subgroups (rare vs. common patients) were compared. RESULTS: In total, 7343 patients (i.e., 1856 rare and 5487 common cancer patients) participated. Rare cancer patients were more often diagnosed and treated in different hospitals compared to common cancer patients (67% vs. 59%, p < 0.001). Rare cancer patients received treatment more often in a single hospital (60% vs. 57%, p = 0.014), but reported more negative experiences when treated in multiple hospitals than common cancer patients (14% vs. 9%, p < 0.001). They also more often received advise from their physician about the hospital to go to for a second opinion (50% vs. 36%, p < 0.001), were more likely to choose a hospital specialized in their cancer type (33% vs. 22%, p < 0.001), and were more willing to travel as long as necessary to receive specialized care than common cancer patients (55% vs. 47%, p < 0.001). CONCLUSIONS: Rare and common cancer patients differ in their health care experiences. Health care for rare cancer patients can be further improved by proper referral to centers of expertise and building a clinical network specifically for rare cancers.

Sexuality in Intimate Partners of People with Cancer: Information and Communication Needs: A Brief Communication.

Partners of patients with cancer report a negative impact on their sexuality and intimacy and experience a lack of information. Little is known about partners' information needs regarding sexuality and intimacy. The study was conducted with 230 partners of patients with cancer using a questionnaire. 56% stated that cancer had negatively affected their sexuality and intimacy. 60% percent reported a need for information. Except a self-reported negative impact of cancer, no characteristics were associated with a higher need for sexuality related information. Partners prefer information that includes practical advice and experiences from others. It is recommended to provide patients and their partner's information on sexuality and intimacy within routine treatment.

Cancer survivors' experiences with conversations about work-related issues in the hospital setting.

OBJECTIVE: Early access to work-related psychosocial cancer care can contribute to return to work of cancer survivors. We aimed to explore: (a) the extent to which hospital healthcare professionals conduct conversations about work-related issues with cancer survivors, (b) whether cancer survivors experience these conversations as helpful, and (c) the possible financial implications for cancer survivors of (not) discussing their work early on. METHODS: The Dutch Federation of Cancer Patient Organizations developed and conducted a cross-sectional online survey, consisting of 27 items, among cancer survivors in the Netherlands. RESULTS: In total, 3500 survivors participated in this study (71% female; mean age (SD) 56 (11) years). Thirty-two percent reported to have had a conversation about work-related issues with a healthcare professional in the hospital. Fifty-four percent indicated that this conversation had been helpful to them. Conversations about work-related issues took place more frequently with male cancer survivors, those aged 55 years or below, those diagnosed with gynecological, prostate, breast, and hematological or lymphatic cancer, those diagnosed ≤2 years ago, or those who received their last treatment ≤2 years ago. There was no statistically significant association between the occurrence of conversations about work-related issues and experiencing the financial consequences of cancer and/or its treatment as burdensome. CONCLUSIONS: Although conversations about work-related issues are generally experienced as helpful by cancer survivors, early access to work-related psychosocial cancer care in the hospital setting is not yet systematically offered.

GP involvement after a cancer diagnosis; patients' call to improve decision support.

BACKGROUND: Shared decision making (SDM) is considered important to realise personalised cancer care. Increased GP involvement after a diagnosis is advocated to improve SDM. AIM: To explore whether patients with cancer are in need of GP involvement in cancer care in general and in SDM, and whether GP involvement occurs. DESIGN & SETTING: An online national survey was distributed by the Dutch Federation of Cancer Patient Organisations (NFK) in May 2019. METHOD: The survey was sent to (former) patients with cancer. Topics included GP involvement in cancer care in general and in SDM. Descriptive statistics and quotes were used. RESULTS: Among 4763 (former) patients with cancer, 59% (n = 2804) expressed a need for GP involvement in cancer care. Of these patients, 79% (n = 2193) experienced GP involvement. Regarding GP involvement in SDM, 82% of patients (n = 3724) expressed that the GP should 'listen to patients' worries and considerations', 69% (n = 3130) to 'check patients' understanding of information', 66% (n = 3006) to 'discuss patients' priorities in life and the consequences of treatment options for these priorities', and 67% (n = 3045) to 'create awareness of the patient's role in the decision making'. This happened in 47%, 17%, 15% and 10% of these patients, respectively. CONCLUSION: The majority of (former) patients with cancer expressed a need for active GP involvement in cancer care. GP support in the fundamental SDM steps is presently insufficient. Therefore, GPs should be made aware of these needs and enabled to support their patients with cancer in SDM.

Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey.

INTRODUCTION: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. METHODS: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. RESULTS: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. CONCLUSION: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.

Discussing sexuality in cancer care: towards personalized information for cancer patients and survivors.

INTRODUCTION: The needs of cancer patients and survivors regarding discussing sexuality are frequently unmet, with many not receiving adequate information. To optimize information about sexuality and cancer, patients' perspective is needed. The goals of this study were to investigate what kind of information Dutch cancer patients need, their ideas on how to improve communication, and to identify patients who are more in need of information regarding sexuality. METHODS: The Dutch Federation of Cancer Patient Organizations developed and conducted a nationwide 28-item online survey. The survey was distributed among cancer patients and survivors. RESULTS: In total, 2657 (ex) cancer patients participated, with a median age of 61 years, and half were male (45.2%). Of the respondents, 65% were in need of information about sexuality. Patients ≤ 61 years (p < 0.001), patients with a self-reported negative effect of cancer on sexuality (p < 0.001) and patients who were diagnosed less than 2 years ago (p < 0.04) reported a higher need for information. Regardless of type of cancer, patients were most in need of practical tips and practical information regarding sexuality. To enhance communication about sexuality, 64% of the respondents suggested that it would be of help if care providers give information as standard care. CONCLUSIONS: (Ex) cancer patient prefer to receive standard information about sexuality by their care providers. According to patients' preferences, information must include practical tips. Age, self-reported negative effect on sexuality status and time from diagnoses influenced the need for information.

An inventory of psychosocial oncological interventions in The Netherlands: identifying availability, gaps, and overlap in care provision.

Purpose: While a wide range of psychosocial oncological (PO) interventions has been developed, a systematic overview of interventions to inform patients, care providers, as well as researchers, policy makers and health insurers, is lacking. The aims of this paper were (1) to describe the attainment of this overview, which may be used in other jurisdictions and for other health conditions and (2) to reflect on what determines developments in this field.Methods: Dutch researchers and care providers were invited to describe PO-interventions they apply in research or clinical practice. Selection criteria for what constituted a PO-intervention were determined. The input was organized in 12 predefined categories (e.g. physical functioning, genetics).Findings: Sixty-six PO-interventions were included in the overview. Two major categories were psychosocial functioning (24%) and physical functioning and recovery (24%). Interventions are mostly directed at adults (65%) and not aimed at a specific type of cancer (61%). Nearly 25% of the interventions lacked scientific underpinning.Conclusions: This paper provides an overview of Dutch PO-interventions and input on what drives their development. The categorizing method can be used in other jurisdictions and for other health care conditions. A next step would be to investigate the effectiveness and evidence of PO-interventions.Implications for Psychosocial Providers and Policy: The open access overview of interventions provides referral information for care providers. By identifying possible gaps and overlap, the overview looks at possible drivers behind developments in this field which will be of interest to policy makers.

The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer.

BACKGROUND: This study investigates the effect of using patient reported outcomes (PROs) about health-related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation. PROCEDURE: Children (N = 193) with cancer participated in a sequential cohort intervention study, with a control (no PRO was used) and intervention group (a PRO was used). For each child three consecutive consultations with the paediatric oncologist were audio recorded in order to assess the discussed psychosocial topics. One third of the audio recordings were qualitatively analysed. RESULTS: The type of the discussed psychosocial topics in the control and intervention group did not differ from each other. However, the discussion of psychosocial topics increased in the intervention group compared to the control group. In both groups, topics within the social domain occurred most frequently and topics regarding the emotional domain had the lowest incidence. CONCLUSIONS: PROs do not change the psychosocial content of communication. Paediatric oncologists already address psychosocial issues during the consultation, regardless of the use of a PRO. However, with a PRO available they address these issues more systematically and more often.

Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: is it effective?

BACKGROUND: The aim of the current study is to investigate the effectiveness of an intervention that provides health-related quality of life (HRQOL) scores of the patient (the QLIC-ON PROfile) to the pediatric oncologist. PROCEDURE: Children with cancer participated in a sequential cohort intervention study: intervention N = 94, control N = 99. Primary outcomes of effectiveness were communication about HRQOL domains (t-test, Mann-Whitney U-test) and identification of HRQOL problems (chi-squared test). Secondary outcomes were satisfaction (multilevel analysis), referrals (chi-squared test), and HRQOL (multilevel analysis). RESULTS: The QLIC-ON PROfile increased discussion of emotional functioning (control M = 32.9 vs. intervention M = 47.4, P < 0.05) and psychosocial functioning (M = 56.9 vs. M = 63.8, P < 0.05). Additionally more emotional problems remained unidentified in the control compared to the intervention group, for example, anger (control 26% vs. intervention 3%, P < 0.01), fear (14% vs. 0%, P < 0.01), and sadness (26% vs. 0%, P < 0.001). The intervention had no effect on satisfaction and referrals, but did improve HRQOL of patients 5-7 years of age with respect to self-esteem (P < 0.05), family activities (P < 0.05), and psychosocial functioning (P < 0.01). CONCLUSIONS: We conclude that a PRO is a helpful tool for systematic monitoring HRQOL of children with cancer, without lengthening the duration of the consultation. It is recommended to be implemented in clinical practice.

Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application.

BACKGROUND: Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. METHODS: Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). RESULTS: The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups. CONCLUSIONS: Based on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.

Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice.

OBJECTIVE: The use of patient reported outcomes (PRO) in routine clinical practice is becoming increasingly common, but there is limited knowledge about the development and implementation of PRO. The objective of the current paper is to provide a thorough description of the development and implementation of a PRO on health related quality of life (HRQOL)--the QLIC-ON PROfile--in clinical paediatric oncology practice. METHODS: The development of the QLIC-ON PROfile is explained by elucidating important choices: the HRQOL instrument, the professional that uses the QLIC-ON PROfile, the optimal form of HRQOL feedback and whether or not a clinically important difference is reported. The description of the implementation of the QLIC-ON PROfile focuses on the education and commitment of the professional that uses the QLIC-ON PROfile. Study design and outcome measures are also elaborated on. RESULTS: Important considerations regarding the development and implementation of PRO interventions are reported. These considerations have also resulted in educational material. CONCLUSION: Our study adds to current knowledge of PRO research. This paper can be used as a practical guide for researchers and other professionals, who are interested in setting up PRO interventions in any clinical setting.

Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands.

BACKGROUND: Knowledge about psychometric properties of the Pediatric Quality of Life Inventory (PedsQL) in the Netherlands is limited and Dutch reference data are lacking. Aim of the current study is to collect Dutch reference data of the PedsQL and subsequently assess reliability, socio-demographic within-group differences and construct validity. METHODS: In this study the PedsQL was administered to Dutch children aged 5 to 18 years. A socio-demographic questionnaire was completed as well. The sample consisted of three age groups: 5-7 years (parent proxy report), 8-12 years and 13-18 years (child self report). Analysis was performed with SPSS 16.0.2. A reliability analysis was done using Cronbach's alpha coefficient. Socio-demographic within-group differences were assessed by means of an ANOVA with post hoc Bonferroni correction and t-tests. Subsequently, construct validity was determined by t-tests and effect sizes. RESULTS: For 496 children PedsQL reference data were collected. PedsQL total scores were 84.18 (group 5-7), 82.11 (group 8-12) and 82.24 (group 13-18). Internal consistency coefficients ranged from .53 to .85. Socio-demographic within-group differences demonstrated that, in group 8-12, children of parents born in the Netherlands had significantly lower scores on several PedsQL subscales, compared to children of parents born in another country. With respect to construct validity, healthy children of group 5-7 and 13-18 scored significantly higher than children with a chronic health condition on all subscales, except for emotional functioning. In group 5-7, the PedsQL total score for healthy children was 85.31, whereas the same age group with a chronic health condition scored 78.80. Effect sizes in this group varied from 0.58 to 0.88. With respect to group 13-18, healthy children obtained a PedsQL total score of 83.14 and children suffering from a chronic health condition 77.09. Effect sizes in this group varied from 0.45 to 0.67. No significant differences were found in group 8-12 regarding health. CONCLUSION: The Dutch version of the PedsQL has adequate psychometric properties and can be used as a health related quality of life instrument in paediatric research in the Netherlands.

Motor performance and functional ability in preschool- and early school-aged children with Juvenile Idiopathic Arthritis: a cross-sectional study.

OBJECTIVE: To describe the level of motor performance and functional skills in young children with JIA. METHODS: In a cross-sectional study in 56 preschool-aged (PSA) and early school- aged children (ESA) with JIA according to ILAR classification, motor performance was measured with the Bayley Scales of Infant Development II (BSID2) and the Movement Assessment Battery for Children (M-ABC). Functional skills were measured with the Pediatric Evaluation of Disability Inventory (PEDI). Disease outcome was measured with a joint count on swelling/range of joint motion, functional ability and joint pain. RESULTS: Twenty two PSA children (mean age 2.1 years) with a mean Developmental Index of the BSID2 of 77.9 indicating a delayed motor performance; 45% of PSA children showed a severe delayed motor performance. Mean PEDI scores were normal, 38% of PSA scored below -2 SD in one or more domains of the PEDI. Thirty four ESA children (mean age 5.2 years) with a mean M-ABC 42.7, indicating a normal motor performance, 12% of ESA children had an abnormal score. Mean PEDI scores showed impaired mobility skills, 70% of ESA children scored below -2 SD in one or more domains of the PEDI. Disease outcome in both age groups demonstrated low to moderate scores. Significant correlations were found between age at disease onset, disease duration and BSID2 or M-ABC and between disease outcome and PEDI in both age cohorts. CONCLUSION: More PSA children have more impaired motor performance than impaired functional skills, while ESA children have more impairment in functional skills. Disease onset and disease duration are correlated with motor performance in both groups. Impaired motor performance and delayed functional skills is primarily found in children with a polyarticular disease course. Clinical follow up and rehabilitation programs should also focus on motor performance and functional skills development in young children with JIA.

Selecting the appropriate outcome in paediatric physical therapy: how individual treatment goals of children with cerebral palsy are reflected in GMFM-88 and PEDI.

OBJECTIVE: To assess to what extent individual physical therapy treatment goals for children with cerebral palsy are reflected in 2 standardized measures: the GMFM-88 and the PEDI. SUBJECTS: A total of 36 paediatric physical therapists working in primary healthcare with children with cerebral palsy in their caseload. METHODS: The International Classification of Functioning, Disability and Health was used as a measure to link individual treatment goals to the GMFM-88 and the PEDI. RESULTS: Sixty percent of the treatment goals were covered by the 2 measures. Twenty-seven percent and 21% of the goals were reflected in the GMFM-88 and the PEDI, respectively; 12% of the goals were reflected in both instruments. Another 26% of the treatment goals appeared to be partly covered (21% in PEDI and 5% in GMFM-88). Fourteen percent of the goals were not covered by the 2 measures. CONCLUSION: Individual goals set in a physical therapy practice for children with cerebral palsy can be linked, to a large extent, to items and activities of 2 standardized measures.