What can we add to the routine consultation of children and adolescents with functional constipation to make the approach decisively more effective?

In our tireless but rewarding labor, we have dedicated ourselves to treating children and adolescents with functional constipation (FC) for decades. The collective understanding of diagnostic criteria and treatment regimens has advanced significantly, providing better care for these children. We have observed promising improvements by introducing new therapeutic measures, inspiring optimism and hope. However, these children have suffered great chronic torment in trying to fulfill a natural life function, that is, to defecate without pain or suffering. What can we do besides clearly understanding that this suffering must be recognized, assessed, and addressed, even in our tireless efforts over many years? These comments are intended to highlight the crucial role that pediatricians and gastroenterologists play in managing children and adolescents with FC, a global functional gastrointestinal problem. Expertise and dedication are essential to managing FC in children and adolescents.

In addition, what knowledge does this provide us with on the subject? Children and adolescents who suffer from FC may repeatedly experience inconvenient, uncomfortable signs and symptoms that can result in frequent healthcare consultations and substantial healthcare utilization costs. These symptoms can be divided into two subtypes: those related to feces (firm stools, scybalous, pebble-like, hard stools, large-diameter stools, and stools that obstruct the toilet), and those related to bowel movements (withholding behavior, painful defecation, fecal incontinence, retentive posturing, excessive volitional stool retention, feelings of incomplete evacuation, not toilet trained, phobic reactions to the toilet and defecation). Patients may also experience physical symptoms such as abdominal pain, abdominal distension, large fecal mass in the rectum, palpable large stools, digital rectal examination, as well as difficulty defining the shape of feces. These symptoms are included in the Rome Criteria IV (1,2). As a clinical entity, constipation can range from mild/moderate disease, which responds to dietary and laxative drug treatment, to severe disease, which does not resolve with conventional therapeutic measures. It is called intractable constipation, which does not respond to conventional medical therapy, and treatment is challenging and requires aggressive and invasive actions (3).

On the other hand, another subcategory of patients with tremendous suffering and risk of losing their lives may also develop constipation primarily or as a consequence of the treatment imposed by the underlying disease. Conditions that lack curative treatment possibilities but can fail to necessitate the exclusive and intensive long-term treatment of pediatric palliative care (PPC). This form of care is of utmost importance in addressing the holistic needs of children suffering from life-threatening or life-limiting illnesses. It encompasses the total care of a child’s body, mind, and spirit and extends to supporting the family (4). A special subgroup of children in palliative care, particularly those suffering from cancer, may experience a combination of the disease, invasive medical procedures, and treatment procedures (chemotherapy, radiotherapy). They can also feel very isolated and lonely due to prolonged hospitalization and the stigma attached to the disease.

Chronic pain is a significant symptom that requires careful management in clinical practice for both adults and children. Effective symptom management is a keystone of PPC, particularly for children with cancer. Opioids (morphine-like drugs) constitute the most important group of drugs in pain management in children needing palliative care. The use of opioids to treat the pain of cancer and other advanced diseases is recommended by the World Health Organization (WHO).

While opioid analgesics are effective in acute and chronic pain, they often lead to gastrointestinal side effects that can significantly impact patients’ health-related quality of life (HRQOL). The Memorial Symptom Assessment Scale (MSAS) for 10- to 18-year-old has been instrumental in identifying these side effects, with lack of energy, drowsiness, nausea, cough, lack of appetite, psychological symptoms, and especially pain in a group of 160 children and young people with cancer aged 10–18 years (5). The adverse effects associated with opioid therapy, particularly constipation, underscore the need for improved pain management strategies, which is critical area for future research in PPC.

Opioid-induced constipation (OIC) is the most common side effect associated with chronic opioid use, which is characterized by a change in defecation patterns with reduced bowel frequency, straining, the sensation of incomplete evacuation, flatulence, abdominal pain, and patient distress that occurs when initiating opioid therapy (6). There are many multifactorial factors in patients with a terminal illness that can lead to Constipation, including diet (decreased fluid intake, foods, fiber, and poor appetite); pharmacological agents (antacids, antiemetics, anti-epileptics, antidiarrhoeal drugs, iron therapy, anti-depressants, diuretics, and calcium-channel blockers); metabolic abnormalities (dehydration, uremia, hypokalaemia, hypothyroidism, hypercalcemia); neurological conditions (decreased mobility, spinal cord abnormalities, autonomic failure); behavioral issues (lack of privacy, and pain resulting in difficulty defecation) (7). These multifactorial causes necessitate comprehensive treatment approaches and a holistic approach to patient care. Table 1 presents the Rome IV Diagnostic Criteria for OIC for adults. Unfortunately, there are no Rome Criteria for children/adolescents.

Thus, there are often multiple contributing factors to the development of constipation, and prevention is often insufficient. Non-pharmacological interventions, such as dietary modifications, physical activity, and behavioral therapies, are crucial in managing chronic pain in PPC. However, implementing these interventions can be challenging due to the unique needs and conditions of the patients, such as their age, the severity of their condition, and their ability to adhere to the interventions. Pharmacological interventions are required, and laxatives are the first-choice treatment. However, they may not always work because they do not affect the underlying disruption of gastrointestinal motility and water retention produced by opioid analgesics.

We need to be prepared to deal with patients with mild constipation, as well as those undergoing palliative treatment, for whom the comfort of adequate intestinal function is fundamental. The medical literature has always provided excellent publications on diagnosis and therapy. In particular, Fleisher (8) presents us with a remarkable book that discusses various facets of the psychosocial aspects of constipation. Furthermore, recently, after a quick read of the review entitled “Functional constipation in children: what physicians should know” (9), the authors provide a comprehensive and well-crafted arrangement with which the author illustrates the manuscript, reinforcing the expression “A picture is worth a thousand words.” which parallels the Chinese saying “百闻不如一见”, referring to the use of images to convey the idea of the power of communication through images. The review is an essential guide for pediatricians and gastroenterologists who wish to approach children and adolescents with FC.

In addition, a variety of other difficulties may be experienced at school, at home, or in social situations, including isolation, absenteeism, bullying, and sexual, emotional, or physical abuse in the family. Psychosocial factors such as negative self-esteem, negative self-adequacy, emotional instability, pessimistic worldview, hostility and aggression, and internalizing and externalizing problems may also be present.

Therefore, psychosocial factors are frequently present and described in children and adolescents with FC. An excellent scoping review protocol, “The psychosocial impact of childhood constipation on the children and family” is based on the process and reports following the PRISMA-ScR guidelines (10). It demonstrates, with extensive bibliographic documentation, that FC unquestionably affects numerous facets of life, resulting in high levels of somatic complaints and high levels of behavioral problems, especially in the school environment. Undoubtedly, FC is a chronic condition that can cause physical and psychosocial problems and presents many challenging signs and symptoms that need to be treated, specifically with lifestyle modifications. In 2024, an extraordinary book offers a special chapter about constipation and soiling, providing appropriate observations on the mental health approach (11).

Notwithstanding this, approximately 25% of patients experience symptoms in adulthood, even with treatment (12). As a result, this can significantly impair an individual’s quality of life (QoL), which is an individual’s perception of their position in the context of their culture, according to the WHO. Since health is essential to QoL, the term HRQOL is more appropriately used. It refers to the perception of one’s living conditions in the face of the disease, its consequences, and related treatments.

At this point, the question arises: what can we add to a routine consultation of children and adolescents with FC to make the approach decisively more effective? Could applying an HRQOL assessment instrument for constipation at all levels of care help those involved, such as parents, caretakers, and the child/adolescent themselves, to better understand this disorder and its effects?

Accordingly, five chief studies evaluated the impact of FC on children’s HRQOL. An American study showed that the average HRQOL score for constipation was significantly lower than that of healthy controls. Parents identified school and emotional issues as the most affected domains (13). In Brazil, a study evaluated 100 children with functional defecation disorders. HRQOL scores were lower than healthy, non-constipated children (14). In Australia, 51 children with constipation, aged 8–18 years old, when compared with 79 healthy controls, had significantly lower HRQOL scores, particularly in psychosocial domains (15). In Sri Lanka, a study in 1,792 adolescents with FC, according to Rome III Criteria, established a lower HRQOL score than controls, associated with a higher degree of somatization (16). Finally, a prospective multicenter study (17) to differentiate children with FC alone from those with FC plus fecal incontinence used the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) (18). The mean total scale score was significantly lower in the fecal incontinence group. All these studies were validated in patients over five years old, using questionnaires to cover physical, emotional, social, and school functioning domains. However, they are generic tools and may not obtain specific information about HRQOL in FC.

Regarding specific instruments to assess HRQOL in FC, a Dutch-specific tool, “Defecation Disorder List (DDL)”, was developed and comprises 37 questions across four domains: emotional functioning, social functioning, and treatment/interventions. Bullying and social isolation at school were the main factors associated with impaired HRQOL (19). Later, the “Parental Opinions of Pediatric Constipation (POOPC)”, comprising 24 questions across four domains: annoyance/concern, family, treatment team, and social, was developed to assess HRQOL in children with constipation, fecal incontinence, and irritable bowel syndrome subtype constipation (20). The POOPC was applied to 410 children aged 2–18 years old, and it helped clinicians recognize areas that need treatment for both children and their caregivers. At about the same time, “The Self-Efficacy for Functional Constipation Questionnaire (SEFCQ)” using Rome III Criteria was developed and validated (21), including three 8-item scales to measure the child’s academic, social, and emotional self-efficacy. Ninety-nine healthy children and 122 children with FC completed the questionnaire. FC scores were lower than healthy children. Later, the Pediatric Functional Constipation Questionnaire-Parent Report (PedFCQuest-PR), a specific HRQOL questionnaire for parents/caregivers of children with FC according to the Rome IV Criteria, was developed, validated, and disclosed good acceptability, validity, sensitivity, responsiveness, reliability, and internal consistency of 0.88 (22). Also, the association between the PedFCQuest-PR total score and the presence/absence of the Rome IV Criteria items was excellent.

Studies have consistently shown that constipation harms the emotional and physical aspects of a child’s HRQOL. It can affect a child’s psychosocial development and relationships with family and friends. Factors such as the child’s temperament, the mother’s distress, the relationship between parent and child, and stressful life events such as child maltreatment, parental divorce, severe illness in the family, bullying, and school changes are also accompanied by constipation can contribute to the onset and maintenance of constipation (23).

Regarding the treatment of FC and HRQOL progress, a generic (KINDL scale) questionnaire with 24 items assessing six dimensions (physical and emotional well-being, self-esteem, family, friends, and school) was applied in children and adolescents with FC according to Rome IV Criteria. After six weeks of conventional treatment, total KINDL scores of children and parents significantly improved (24).

Systematic reviews with meta-analysis could be a consistent way to analyze and better understand the impact of constipation on children’s HRQOL. In 2019, an excellent review of 20 studies with 2,344 children found that children with FC had lower HRQOL scores than healthy children. The authors recommended using questionnaires in clinical scenarios and research as a secondary outcome for pediatric FC (25). Indeed, the study must be conducted using specific questionnaires validated for the local language and FC definition following the current Rome Criteria.

In conclusion, FC is a prevalent gastrointestinal disorder that can affect a child’s HRQOL, which can be influenced by physiological, psychological, social, cultural, behavioral, and economic factors. Thus, assessing HRQOL during the initial visit could be a cost-effective way to monitor the effects of this disorder on a child’s well-being, improve symptom relief, and communicate effectively with children and their parents/caregivers. We hope that with the implementation of the HRQOL assessment of children and adolescents, we will have more “light at the end of the tunnel”. Most questionnaires are quickly answered and can even be administered in the doctor’s office’s waiting room.

In due course, after answering the HRQOL (PedFCQuest-PR) questionnaire, using a placeholder reserved for the respondent’s free comments, a mother wrote, “Now, after answering all these questions about my son’s constipation problem, I realized how complex it is and how much I did not know about it.”

Acknowledgments

We would like to thank all children, adolescents, parents, and caregivers who have educated us so much over time.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-31/prf

Funding: None.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-31/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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