Better response to low FODMAP diet in disorders of gut-brain interaction patients with pronounced hydrogen response to a nutrient challenge test.

BACKGROUND AND AIM: Previous studies have shown a reduction of gastrointestinal symptoms in irritable bowel syndrome (IBS) patients following a low FODMAP diet (LFD). It remains unknown which disorders of gut-brain interaction (DGBI) patients would benefit most from LFD. We aimed to analyze LFD response regarding a preceding nutrient challenge test (NCT). METHODS: Data of 110 consecutive DGBI patients undergoing NCT and LFD between August 2015 and August 2018 were analyzed retrospectively. LFD response was assessed by changes in IBS Symptom Severity Score (IBS-SSS). In mixed-effects linear regression models, the impact of hydrogen values and abdominal symptoms during NCT, performed with 30-g lactulose and 400-mL liquid test meal, on IBS-SSS changes were analyzed. RESULTS: Low FODMAP diet induced a significant IBS-SSS reduction of 78 points (95% confidence interval [CI] 50-96; P < 0.001). Patients with higher NCT-induced hydrogen increase during proximal intestinal transit had a significantly better LFD response (-66 IBS-SSS reduction per 10-ppm hydrogen increase, 95% CI -129 to -4, P = 0.045). Additionally, the higher the NCT-induced maximum hydrogen increase during mid-distal and distal intestinal transit, the better are the responses to LFD (-6 IBS-SSS per 10-ppm maximum delta hydrogen, 95% CI -11 to -1, P = 0.040). There was no association of LFD response with abdominal symptom generation during NCT. CONCLUSIONS: Our study is the first one analyzing and demonstrating significant associations between NCT results and LFD response. These findings are of high clinical importance, as they identify a subgroup of DGBI patients that may profit most from a restrictive LFD as first-line therapy.

Motor Proficiency and Generalized Self-Efficacy Toward Physical Activity in Children With Intestinal Failure.

OBJECTIVE: Survival rates of children with intestinal failure have increased; however, associated co-morbidities may affect long-term motor developmental outcomes. This study evaluates motor proficiency and generalized self-efficacy toward physical activity (PA) in children ages 6 to 12 years with intestinal failure. METHODS: This is an observational, cross-sectional study of children followed in a multidisciplinary intestinal rehabilitation program. Motor proficiency was assessed using the Bruininks-Oseretsky Test of Motor Proficiency-2 Short Form (BOT-2 SF) and the Scales of Independent Behavior (parent-proxy report). Children completed the Children's Self-Perceptions of Adequacy in and Predilection for Physical Activity (CSAPPA) and a PA questionnaire. Relevant demographic and medical variables were correlated with assessment results. RESULTS: Participants include 30 children (18 males), median age 7 years (interquartile range [IQR] 6-9) with gestational age 35 weeks (IQR 32-39) and birth weight 2.13 kg (IQR 1.68-2.77). Thirteen (43%) were dependent on parenteral nutrition. Fifteen (50%) scored below average on the BOT-2 SF. Lower BOT-2 SF scores were significantly associated with lower CSAPPA scores (r = 0.480, P = 0.01), with a common barrier to PA being the presence of a central line or enterostomy tube. Gestational age, height z scores, length of hospital admissions, and number of septic events were all significantly correlated with lower scores in motor proficiency. Number of septic events and total parenteral nutrition days were significant predictors of lower BOT-2 SF scores, when adjusting for birth weight. CONCLUSIONS: Multiple medical variables related to intestinal failure may affect motor proficiency and PA self-efficacy. Developmental follow-up is important to optimize motor skill development and promote PA participation.

Bowel Endometriosis Syndrome: a new scoring system for pelvic organ dysfunction and quality of life.

STUDY QUESTION: Is it possible to develop a validated score that can identify women with Bowel Endometriosis Syndrome (BENS) and be used to monitor the effect of medical and surgical treatment? SUMMARY ANSWER: The BENS score can be used to identify women with BENS and to monitor the effect of medical and surgical treatment of women suffering from bowel endometriosis. WHAT IS KNOWN ALREADY: Endometriosis is a heterogeneous disease with extensive variation in anatomical and clinical presentation, and symptoms do not always correspond to the disease burden. Current endometriosis scoring systems are mainly based on anatomical and surgical findings. STUDY DESIGN, SIZE, DURATION: The score was developed and validated from a cohort of 525 women with medically or surgically treated bowel endometriosis from Aarhus and Copenhagen University Hospitals, Denmark. PARTICIPANTS/MATERIALS, SETTING AND METHODS: Patients filled in questionnaires on pelvic pain, quality of life (QoL) and urinary, sexual and bowel function. Items were selected for the final score using clinical and statistical criteria. The chosen variables were included in a multivariate analysis. Individual score values were designated items to form the BENS score, which was divided into 'no BENS', 'minor BENS' and 'major BENS.' Internal and external validations were performed. MAIN RESULTS AND THE ROLE OF CHANCE: The six most important items were 'pelvic pain', 'use of analgesics', 'dyschezia', 'straining to urinate', 'fecal urgency' and 'satisfaction with sexual life'. The range of the BENS score (0-28) was divided into 0-8 (no BENS), 9-16 (minor BENS) and 17-28 (major BENS). External validation showed a significant association between BENS score and QoL (P = 0.0001). LIMITATIONS, REASONS FOR CAUTION: The BENS scoring system is limited by the fact that it was developed from a single endometriosis unit in Denmark, making it susceptible to social, cultural and demographic bias. WIDER IMPLICATIONS OF THE FINDINGS: It is the first endometriosis classification system to be based directly on the symptomatology of the patient. Validation in other languages will promote comparison of treatments and results across borders. STUDY FUNDING/COMPETING INTEREST(S): No external funding was either sought or obtained for this study. A.F. is an investigator for Bayer, outside this work.

Travelling With Children on Home Parenteral Nutrition.

BACKGROUND: Home parenteral nutrition (HPN) is an established therapy in children with intestinal failure. Parenteral nutrition (PN) management allows most paediatric patients to participate in age-appropriate activities; however, HPN may lead to significant restrictions, particularly going on holiday. We aimed to identify sociodemographic and illness-specific variables that influence if and how families with children on HPN travel. METHODS: A standardised questionnaire was sent to all 40 children on HPN within a large tertiary intestinal failure centre in the United Kingdom. Depending on whether the family had/had not been on holiday since their child had started HPN, questions were asked to understand the reasons for not travelling or to gather information about individual travel experiences. RESULTS: A total of 30 children were enrolled, 20 of 30 went at least once on holiday, and 5 of 30 travelled more than once per year, 70% travelled outside Britain. Going on vacation was more common, the longer the child had been on HPN (P = 0.022); hours spent on PN tolerance of enteral feeds or the child's age did not influence travel behaviour; 80% of parents who went on vacation had a good/worthy experience, 95% would travel again. The biggest reported obstacle was the transportation of PN bags. Ten families sacrificed a holiday over fear that it may be difficult to arrange or because of the child's unstable medical condition. CONCLUSIONS: A significant proportion of families chose to go on holiday away from home despite their child being on HPN. The experience is considered good by most.

Validity and reliability of a Lithuanian version of low anterior resection syndrome score.

BACKGROUND: Up to 90 % of patients undergoing low anterior resection complain of increased daily bowel movements, urgency, and a variable degree of incontinence. A symptom-based scoring system for bowel dysfunction after low anterior resection for rectal cancer has recently been developed and validated. The aim of our study was to adapt the low anterior resection syndrome (LARS) scale questionnaire to the Lithuanian language, and assess its psychometric properties. METHODS: The LARS questionnaire was translated into Lithuanian by the Scientific Advisory Committee of the Medical Outcomes Trust using a standard procedure of double-back translation. The Lithuanian version of the LARS (LARS-LT) questionnaire was completed by 111 patients who underwent low anterior resection with total mesorectal excision in the period from January 1, 2008, to December 31, 2012, at the National Cancer Institute. An anchor question from the Wexner score assessing the impact of bowel function on lifestyle was included. A subgroup of 20 patients completed the LARS-LT questionnaire twice. Validity was tested using a factor analysis, and internal reliability was estimated using the Cronbach's alpha and intraclass correlation coefficients. RESULTS: Twenty-seven patients (25 %) had no LARS, 26 (24 %) had minor LARS, and 55 (56 %) had major LARS. The response rate was 60.7 %. The LARS-LT showed significantly high reliability and internal consistency [Cronbach's α = 0.88, interclass correlation coefficient-0.86 (0.71-0.98)]. The LARS score showed significant correlations with the lifestyle question (p < 0.05). It could not detect differences between female and male patient groups (p = 0.33), patients' age (p = 0.45), patients who had/had not undergone radiation therapy (p = 0.07), and those in whom the distal edge of the tumor was close to or far from the anal verge (p = 0.17). CONCLUSIONS: The Lithuanian version of the LARS-LT shows acceptable psychometric properties and can be considered a valuable and specific instrument to assess bowel function in rectal cancer patients, both for research purposes and in clinical practice.

Long-term bowel disorders following radial cystectomy: an underestimated issue?

PURPOSE: Patients after radical cystectomy (RC) frequently complain about bowel disorders (BDs). Reports addressing related long-term complications are sparse. This cross-sectional study assessed changes in bowel habits (BH) after RC. METHODS: A total of 89 patients with a minimum follow-up ≥1 year after surgery were evaluated with a questionnaire. Patients with BD prior to surgery were excluded. Symptoms such as diarrhea, constipation, bloating/flatulence, incomplete defecation, uncontrolled stool loss, and impact on quality of life (QoL) were assessed. RESULTS: A total of 46.1 % of patients reported changes in BH; however, only 25.8 % reported experiencing related dissatisfaction. Primary causes of dissatisfaction were diarrhea and uncontrolled stool loss. The most common complaints were bloating/flatulence and the feeling of incomplete defecation, but these symptoms did not necessarily lead to dissatisfaction or impairment in quality of life. No difference was identified between an orthotopic neobladder and ileal conduit, and even patients without bowel surgery were affected. QoL, health status, and energy level were significantly decreased in unsatisfied patients. CONCLUSIONS: About 25 % of patients complain about BDs after RC. More prospective studies assessing symptoms, comorbidities, and dietary habits are necessary to address this issue and to identify strategies for follow-up recommendations.

Fear of recurrence: the importance of self-efficacy and satisfaction with care in gay men with prostate cancer.

OBJECTIVE: Limited research has investigated the psychosocial processes that underpin the effect of physical symptoms on fear of cancer recurrence. Additionally, despite evidence of increased vulnerability of marginalized populations to negative outcomes, few studies have examined the unique experience of gay men coping with the cancer process. The goals of this study were to determine whether disease-related self-efficacy and satisfaction with medical care mediated the relationship between greater physical symptoms and worse fear of recurrence among gay or bisexual prostate cancer survivors. METHODS: Participants were composed of 92 self-identified gay or bisexual men, who had received a diagnosis of prostate cancer in the past 4 years. Participants provided demographic information and completed self-report questionnaires that assessed symptom function, self-efficacy for prostate cancer symptoms, satisfaction with healthcare, and fear of recurrence. Bootstrapping procedures were used to assess for significant mediation. RESULTS: Results suggested significant mediation of the relationship between each of bowel, hormonal, and sexual function with fear of recurrence by self-efficacy and satisfaction with healthcare. Mediation was not significantly supported for the association between urinary function and fear of recurrence. CONCLUSIONS: Findings support the explanatory effects of self-efficacy for symptom management and satisfaction with healthcare on the relationship between symptom function and fear of recurrence. These results indicate that psychological processes, specifically psychological factors that hold particular relevance to gay or bisexual men, reflect a potential avenue for intervention to decrease fear of cancer recurrence.

Stressful Life Events in Children With Functional Defecation Disorders.

OBJECTIVES: The aim of the study was to determine the prevalence of stressful life events including (sexual) abuse in children with functional defecation disorders by performing a systematic review. METHODS: We searched MEDLINE, EMBASE, and PsycINFO for cohort, case-control and cross-sectional studies investigating the prevalence of stressful life events, including (sexual) abuse in children with functional defecation disorders. RESULTS: The search yielded 946 articles, of which 8 were included with data from 654 children with functional constipation and 1931 children with (constipation-associated) fecal incontinence (FI). Overall, children with functional defecation disorders had been significantly more exposed to stressful life events than healthy children, with prevalence rates ranging from 1.6% to 90.9%. Being bullied, being a relational victim, interruption of toilet training, punishment by parents during toilet training, and hospitalization were significantly related to FI, whereas separation from the best friend, failure in an examination, severe illness in a close family member, loss of job by a parent, frequent punishment, and living in a war-affected area were significantly related to constipation. Only 1 study measured the prevalence of child abuse, which reported a significantly higher prevalence of child (sexual) abuse in children with FI compared with controls. CONCLUSIONS: The prevalence of stressful life events, including (sexual) abuse is significantly higher in children with functional defecation disorders compared with healthy children. To gain more insight into the true prevalence of child (sexual) abuse in children with functional defecation disorders, more studies are clearly needed.

Measuring and predicting prostate cancer related quality of life changes using EPIC for clinical practice.

PURPOSE: We expanded the clinical usefulness of EPIC-CP (Expanded Prostate Cancer Index Composite for Clinical Practice) by evaluating its responsiveness to health related quality of life changes, defining the minimally important differences for an individual patient change in each domain and applying it to a sexual outcome prediction model. MATERIALS AND METHODS: In 1,201 subjects from a previously described multicenter longitudinal cohort we modeled the EPIC-CP domain scores of each treatment group before treatment, and at short-term and long-term followup. We considered a posttreatment domain score change from pretreatment of 0.5 SD or greater clinically significant and p ≤ 0.01 statistically significant. We determined the domain minimally important differences using the pooled 0.5 SD of the 2, 6, 12 and 24-month posttreatment changes from pretreatment values. We then recalibrated an EPIC-CP based nomogram model predicting 2-year post-prostatectomy functional erection from that developed using EPIC-26. RESULTS: For each health related quality of life domain EPIC-CP was sensitive to similar posttreatment health related quality of life changes with time, as was observed using EPIC-26. The EPIC-CP minimally important differences in changes in the urinary incontinence, urinary irritation/obstruction, bowel, sexual and vitality/hormonal domains were 1.0, 1.3, 1.2, 1.6 and 1.0, respectively. The EPIC-CP based sexual prediction model performed well (AUC 0.76). It showed robust agreement with its EPIC-26 based counterpart with 10% or less predicted probability differences between models in 95% of individuals and a mean ± SD difference of 0.0 ± 0.05 across all individuals. CONCLUSIONS: EPIC-CP is responsive to health related quality of life changes during convalescence and it can be used to predict 2-year post-prostatectomy sexual outcomes. It can facilitate shared medical decision making and patient centered care.

Long-term survival, nutritional autonomy, and quality of life after intestinal and multivisceral transplantation.

OBJECTIVE: To assess long-term survival, graft function, and health-related quality of life (QOL) after visceral transplantation. BACKGROUND: Despite continual improvement in early survival, the long-term therapeutic efficacy of visceral transplantation has yet to be defined. METHODS: A prospective cross-sectional study was performed on 227 visceral allograft recipients who survived beyond the 5-year milestone. Clinical data were used to assess outcome including graft function and long-term survival predictors. The socioeconomic milestones and QOL measures were assessed by clinical evaluation, professional consultation, and validated QOL inventory. RESULTS: Of 376 recipients, 227 survived beyond 5 years, with conditional survival of 75% at 10 years and 61% at 15 years. With a mean follow-up of 10 ± 4 years, 177 (92 adults, 85 children) are alive, with 118 (67%) recipients 18 years or older. Nonfunctional social support and noninclusion of the liver in the visceral allograft are the most significant survival risk factors. Nutritional autonomy was achievable in 160 (90%) survivors, with current serum albumin level of 3.7 ± 0.5 gm/dL and body mass index of 25 ± 6 kg/m(2). Despite coexistence or development of neuropsychiatric disorders, most survivors were reintegrated to society with self-sustained socioeconomic status. In parallel, most of the psychological, emotional, and social QOL measures significantly (P < 0.05) improved after transplantation. Current morbidities with potential impact on global health included dysmotility (59%), hypertension (37%), osteoporosis (22%), and diabetes (11%), with significantly (P < 0.05) higher incidence among adult recipients. CONCLUSIONS: With new tactics to further improve long-term survival including social support measures, visceral transplantation has achieved excellent nutritional autonomy and good QOL.

Quality of life in patients and in family members of those receiving home parenteral support with intestinal failure: A systematic review.

BACKGROUND & AIMS: People with type 3 intestinal failure require regular home parenteral support (HPS) for survival. Intestinal failure is a long term condition and HPS is a burdensome treatment so understanding quality of life (QoL) and how people live with HPS over time is essential. The aim of this review was to assess the impact of HPS on QoL in adults receiving HPS and their family members. METHODS: A systematic review (PROSPERO 2020 CRD42020166197) of the literature was performed using MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trails, PsycInfo, Web of Science and PROSPERO. Included articles were hand searched to identify any other relevant studies. Eligibility assessment was performed independently by two reviewers in an unblinded standardised manner. Quality was assessed using appropriate Joanna Briggs Institute critical appraisal tools. Data were extracted independently by two reviewers using predefined data fields. Certainty of evidence was assessed using GradePro. RESULTS: Included in this review were 12 studies with 1236 patients receiving HPS. There were 10 observational studies and 2 randomised controlled trials. Only studies examining QoL in adults receiving HPS were found. There were no studies examining QoL in family carers of these patients. The quality of evidence was graded as low to high and the certainty of evidence for QoL was graded as very low to low. It was not possible to perform a meta-analysis so a narrative review was conducted. All of the studies considered quality of life using validated questionnaires. QoL of patients receiving HPS was lower than the general population regarding physical functioning. Patients had a higher QoL the fewer nights each week they received HPS. CONCLUSIONS: HPS prescriptions seemed to influence QoL. However, the certainty of evidence was very low to low so there is very little to limited confidence about the effect of HPS on patient QoL. Research into family members' QoL is lacking and requires further investigation.

Disabled children and adolescents may be outsiders in the community.

BACKGROUND: Most children with neurogenic bladder and bowel dysfunctions suffer from myelomeningocele and shunted hydrocephalus. Fewer such births and better treatment have led to more children reaching adulthood. Increased knowledge about their lived experiences can direct support to help them. AIM: The study aims to investigate how children and adolescents aged between 10 and 18 years old with neurogenic bladder and bowel dysfunction live their everyday life. METHODS: Hermeneutic phenomenology was appropriate to investigate the participants' experiences in depth. Thirteen qualitative interviews were analysed by coding line-by-line in order to find the essence and themes that underpin their responses. FINDINGS: The major theme being an outsider in the community, was built upon the themes, constraint and togetherness. Constraint was caused by their need for regular clean intermittent catheterization, bowel movement, aids and assistance from others, which identified a participant as being an outsider. They were only partially outsiders because they were inside the community and they enjoyed togetherness in their everyday life from their families, peers and other significant people. They appeared to be rather unaware of their problems. LIMITATIONS: The wide range of participants' ages was a limitation, as these young people develop a great deal between these ages; in order to guarantee confidentiality, the participants were too few to divide into groups. CONCLUSIONS: These young people would be helped if supported more towards independence by people inside their circle. Today, support is usually given by personal assistants and by the use of advanced techniques. Less support is given for development towards independence. Competent health-care professionals working together with the parents should have the opportunity to provide such valuable support.

Factors that influence treatment-seeking expectations in response to infectious intestinal disease: Original survey and multinomial regression.

BACKGROUND: Infectious intestinal disease affects 25% of the UK population annually; 1 in 50 affected people consult health professionals about their illness. AIMS: We tested if anticipated treatment-seeking decisions for suspected infectious intestinal disease could be related to emotional response, tolerance of symptoms, or beliefs about the consequential benefits and harms of seeking treatment (or not). METHODS: Questionnaire survey of adults living in the UK with statistical analysis of responses. A vignette was presented about a hypothetical gastrointestinal illness. People stated their emotional reactions, expected actions in response and beliefs about possible benefits or harms from seeking treatment (or not getting treatment). Multinomial regression looked for predictors of anticipated behaviour. RESULTS: People were inclined to consult a GP when they believed that seeking treatment would be beneficial and that its absence would be harmful. Seeking treatment was less anticipated if the condition was expected to improve quickly. Respondents were also more likely to consult if they strongly disliked fever or headache, and/or if the illness made them feel anxious or angry. Treatment-seeking (or lack of it) was not linked to harms from treatment-seeking, other specific symptoms and emotional responses. CONCLUSION: It was possible to link anticipated treatment-seeking behaviour to specific factors: expected prognosis, perceived benefits of seeking treatment, some emotions and some specific symptoms.

Common Urinary and Bowel Disorders in the Geriatric Population.

The prevalence of urinary incontinence and other lower urinary tract symptoms increases with older age. These symptoms are more noticeable in men after the seventh decade of life and in women after menopause. Constipation and fecal incontinence are major causes of symptoms in elderly patients and can significantly impair quality of life. This article summarizes the current literature regarding the occurrence and implications of lower urinary tract and bowel symptoms in the geriatric population.

[Total parenteral nutrition for ileus in the palliative phase]. / Totale parenterale voeding bij ileus in de palliatieve fase.

Total parenteral nutrition may be considered for a carefully selected group of palliative patients with ileus. Predictive factors include a strong desire to live, low burden of disease other than the ileus and expected increase in quality of life as a result of starting with total parenteral nutrition. Therapy compliance is required and a strong social network is desirable. Close collaboration between hospital and general practitioners and frequent reviews of the palliative care plan are also required for success.

The impact of intestinal transplantation on quality of life.

INTRODUCTION: Intestinal failure (IF) and intestinal transplant (ITx) are associated with poor quality of life (QoL). Disease-specific assessment of QoL for IF and ITx is challenging, owing to the different problems encountered. We have sought to compare QoL pre-ITx with post-ITx and have compared generic QoL with a stable IF population. METHODS: Two prospectively maintained databases of patients referred for and undergoing ITx and a chronic (Type 2 & 3) IF cohort were interrogated. QoL instruments used were generic (EQ-5D-5L and SF-36) and disease-specific (HPN-QOL and ITx-QOL). Analysis used Student's t-test and one-way ANOVA with Bonferroni correction for multiple comparisons. Data were collected pre- and post-ITx at 3, 6, 12-months and yearly thereafter. RESULTS: All QoL instruments improved following ITx to levels comparable with a cohort of stable IF patients not requiring ITx. Both the visual analogue score component (EQ-5D-5L) and the effect of underlying illness on QoL (HPN-QOL/ITx-QOL) were higher following ITx than either pre-ITx or when compared with the IF cohort. Effects on general health, ability to eat and drink, to holiday and travel were improved as early as 3 months post-ITx. Other components did not before 6-12 months following ITx, but were maintained to at least 24 months. Patient personal financial pressures are greater following ITx, even in a publicly funded healthcare system. CONCLUSION: ITx has beneficial effects on QoL compared to those assessed for or awaiting ITx. QoL following ITx is similar to patients with IF not requiring ITx. A QoL instrument that covers the journey of patients from IF through ITx would assist longitudinal analysis of the value and timing of ITx at an individual level.

Nutritional Status and Quality of Life in Hospitalised Cancer Patients Who Develop Intestinal Failure and Require Parenteral Nutrition: An Observational Study.

(1) Background: Malnutrition in cancer patients impacts quality of life (QoL) and performance status (PS). When oral/enteral nutrition is not possible and patients develop intestinal failure, parenteral nutrition (PN) is indicated. Our aim was to assess nutritional status, QoL, and PS in hospitalised cancer patients recently initiated on PN for intestinal failure. (2) Methods: The design was a cross-sectional observational study. The following information was captured: demographic, anthropometric, biochemical and medical information, as well as nutritional screening tool (NST), patient-generated subjective global assessment (PG-SGA), functional assessment of cancer therapy-general (FACT-G), and Karnofsky PS (KPS) data. (3) Results: Among 85 PN referrals, 30 oncology patients (56.2 years, 56.7% male) were identified. Mean weight (60.3 ± 16.6 kg) corresponded to normal body mass index values (21.0 ± 5.1 kg/m2). However, weight loss was significant in patients with gastrointestinal tumours (p < 0.01). A high malnutrition risk was present in 53.3-56.7% of patients, depending on the screening tool. Patients had impaired QoL (FACT-G: 26.6 ± 9.8) but PS indicated above average capability with independent daily activities (KPS: 60 ± 10). (4) Conclusions: Future research should assess the impact of impaired NS and QoL on clinical outcomes such as survival, with a view to encompassing nutritional and QoL assessment in the management pathway of this patient group.

Health-related quality of life, anxiety, depression and distress of mothers and fathers of children on Home parenteral nutrition.

BACKGROUND & AIMS: Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. METHODS: A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests. RESULTS: No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. CONCLUSIONS: On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.