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Parent Reported OutcomesMeasure development and implementation in pediatric clinical practicevan Oers, H.A.

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Download date:21 Jul 2021

1General introduction

Chapter 1

8

Pediatric chronic diseases

In the Netherlands, it is estimated that around 500,000 children (14%) aged 0-18 years (1) to

1.3 million children and young adults (0-25 years) (2) are growing up with a chronic disease

or health condition (in the rest of this thesis referred to as ‘chronic disease’). A disease is

considered to be a chronic disease if the diagnosis is based on medical scientific knowledge,

it is not (yet) curable and it has been present for longer than three months (3). In the last

decades, the total prevalence of children growing up with a chronic disease has increased (4).

This increase is achieved by improvements in diagnostics, treatment strategies and techniques,

which have led to higher survival rates for many congenital, perinatal or other severe medical

pediatric diseases. It is expected that the increase of the prevalence of chronic diseases in

children and adolescents will continue in the upcoming decades (3). As a result of this growing

number of children with a chronic disease, the number of parents taking care of an ill child is

also increasing.

A pediatric disease affects not only the child, but the entire family, especially the parents or

caregivers (5) (in the rest of this thesis referred to as ‘parents’). When parents are confronted

for the first time with a chronic or potentially life-threatening disease of their child, this can be a

stressful or even traumatic event, including feelings of uncertainty. When children grow up with

the chronic disease, parents may have to adjust their expectations regarding the developmental

milestones of their child and may experience emotional consequences. In addition, having a

child with a chronic disease has an impact on parent’s family and social life. Consequently,

caring for a child with a chronic disease may place a significant burden on the parents and this

thesis therefore focuses on parental outcomes.

Parental outcomes

Previous research shows that parents of a child with a chronic disease experience more problems

in psychosocial functioning than parents of healthy children. For example, they report more

depressive symptoms, as is recently shown in a meta-analysis of the literature (6). In addition,

these parents report more often clinical burnout, compared with parents of healthy children (7),

and experience more Posttraumatic Stress Disorder (PTSD) symptoms (8). In addition, it is shown

that parents of a child with a chronic disease report a seriously lower Health Related Quality

of Life (HRQOL) than parents of healthy children (9). HRQOL incorporates measures of physical

symptoms, functional status and disease impact on psychological and social functioning (10).

General introduction

9

1Parental predispositions

Some parents are more vulnerable than others to develop psychosocial problems. Several risk

and protective factors have been described in the literature related to different outcomes.

Depending on parental predispositions as personality, parental chronic disease, life-events and

gender, some parents are at risk or resilient as it comes to developing parental psychosocial

problems. Previous research shows that risk factors for poorer parental outcomes on the level

of parental predispositions include earlier stressful life events (11), and being chronically ill as

a parent (12). Regarding personality traits, extraversion, emotional stability and agreeableness

were found to negatively relate to higher levels of parenting stress (13). Higher parental self-

esteem was found to be a protective factor for psychological health (14). In addition, a gender

difference is often shown, where mothers of children with a chronic disease experience higher

levels of parental distress (15), depression (6), psychological distress, anxiety, somatization,

hopelessness, and posttraumatic stress symptoms than fathers (16).

Parental mediating factors

Parental perceptions, e.g. perceptions of child vulnerability, coping, and child-rearing attitudes,

may mediate the relationship between parental predispositions and parental outcomes. A

parent’s belief that a child is vulnerable or susceptible for harm or illness can potentially have an

adverse effect on the child’s development (17). High perceived vulnerability can be associated

with overprotective behavior in parents and psychological problems in children, e.g. school

underachievement, psychosomatic complaints (18) and more externalizing behavioral problems

(19). Greater parenting stress is associated with poorer psychological adjustment in parents. In

addition, research showed that children with diabetes whose mothers experienced a high degree

of parenting stress and perceived child vulnerability are more likely to experience depressive

symptomatology (20). Regarding coping styles, ‘seeking social support’ and ‘confrontation’

styles are predictors for positive social adjustment to chronic illness (21).

Child factors

Chronic disease of the child

There is a large variation in pediatric chronic diseases regarding severity, onset and progress. For

example, congenital diseases, such as cystic fibrosis or Down syndrome, can be distinguished

from later acquired diseases, such as diabetes mellitus or cancer. In addition, short-term (e.g.

meningitis) and long-term (e.g. juvenile idiopathic arthritis) diseases can be discriminated. Both

short and long-term diseases may have an acute start of the disease (3). In the Netherlands,

chronic diseases that are quite prevalent are asthma, obesity, ADHD and atopic eczema (1).

Because these diseases cannot be cured, many children require lifelong medical treatment.

Chapter 1

10

Medical treatment for the majority of children with a chronic disease is associated with frequent

hospital visits, painful medical procedures, medication use, dietary restrictions, school absence,

and restriction of activities.

Child psychosocial functioning

Children growing up with chronic diseases are facing challenges in several domains of their

lives and are therefore at greater risk for psychosocial problems than their healthy peers

(22). For example, children with chronic diseases have lower self-esteem (23), lower levels of

academic, physical, and social functioning (24) and more behavior problems (25) compared to

their healthy peers.

Influence of child factors on parental outcomes

Parental outcomes should always be considered in the context of the functioning of their

children. The well-being of the child with a chronic disease influences the well-being of their

parents. Regarding risk and protective factors for parental outcomes, medical determinants of

the child’s illness, such as disease severity (26, 27), illness duration (28) and the child’s physical

dysfunctions and limitations in cognitive functioning (13) appear to be less important in

predicting worse parental functioning (26, 29, 30) in comparison to psychological determinants,

e.g. child behavior problems and care giving demands (14). This is in line with a recent study

in parents of children with diverse chronic conditions that suggests that other accompanying

disorders of the child have a greater impact on caregiver burden than the complexity of the

medical regimen or the length of the illness itself (31).

Influence of parental outcomes on child factors

Vice versa, parental well-being influences the well-being of their children (29). For example,

increased depressive symptoms of caregivers are associated with negative parenting practices

(32), maternal depression is associated with a more negative mother–child relationship (33),

and parental depressive symptoms reduce concern for children’s feelings and interests (34).

The psychosocial functioning of the parents may also have an effect on the physical health

of the chronically ill child. For example, parental depression is associated with metabolic control

in youth with diabetes (35). Also, maternal depressive symptoms predict child asthma symptoms

(36), influence the child’s adherence to therapy (37), and asthmatic children of caregivers with

a depressive or anxiety disorder have lower pulmonary function and asthma control (38). Also,

a direct association is shown of parenting stress with disease severity and healthcare utilization

of children with sickle cell disease (39). Relationships between quality of family functioning and

frequency of family routines to treatment adherence in pediatric asthma have been found (40).

It is therefore not only important to pay attention to parental outcomes for parents

themselves, but also for the interaction with their children, and their children’s psychosocial

well-being and physical health.

General introduction

11

1Environmental factors

Also, the environment of the parents plays an important role in developing or maintaining

psychosocial problems. And again, vice versa, parental psychosocial functioning can have an

influence on environmental factors, e.g. work or social relations. On a sociodemographic level,

protective factors for psychosocial problems include high education level (26), and risk factors

include single marital status and the ill child being the mother’s only child (41).

On a social level, the time-consuming care for a child with a chronic disease does not allow

much room for social contacts or other family interaction, for example because many parents

indicate that they never can leave their children alone and permanently have to look after them

(42). Consequently, many parents may have the impression that other people avoid contact

with their family because of their child’s disease (42). Also, research showed that these parents,

especially fathers, spend less time doing leisure activities than parents of healthy children (43).

As a result, social isolation is associated with an increased risk of long-standing psychosocial

morbidity (27). Emotional support (12) and higher family function (14) are identified as

protective factors for parental psychological well-being.

Regarding the practical issues, disease management responsibilities (i.e., managing the

medication schedule, implementing dietary recommendations, attending medical appointments)

increase the burden on all family members (44), and require several hours of additional care per

day compared to healthy children (45). As a result, parents of children with a chronic disease

work fewer hours a week, mothers participate less often in the labor force (43), and parents

face difficulties in having to find flexible work. They also report absenteeism from work, and

dealing with unsupportive attitudes from employers (46). Other practical issues include finding

appropriate childcare, time constraints, having to foster healthy functioning of their ill child, and

taking on the responsibility of ‘being there’ for the whole family (46). All the above-mentioned

environmental factors may have a negative influence on parental psychosocial functioning.

Model for Parental Outcomes

To conceptualize the relationships of parental outcomes, parental predispositions, factors

that may mediate the relation between these constructs, and child and environmental factors

described above, a model was created (figure 1). This self-composed model for Parental

Outcomes is based on the theoretical models of Wallander and Varni (29), Valderas and Alonso

(47) and Grootenhuis (48).

Chapter 1

12

Figure 1. Model for Parental Outcomes

Measuring Parental Outcomes with Parent Reported Outcome Measures

When parents report on their own psychosocial functioning and HRQOL, these reports

can be considered ‘Parent Reported Outcomes’ (ParROs). The term ParROs is derived from

Patient Reported Outcomes (PROs): patients’ reports on their functioning and well-being (49).

Therefore, parents’ report on their own functioning and well-being can be defined as ParROs

and can be used to inform healthcare professionals on parental psychosocial functioning.

To measure ParROs, Parent Reported Outcome Measures (ParROMs) can be used. The term

ParROMs is derived from PROMs (Patient Reported Outcome Measures). PROMs, e.g. HRQOL

measures, are standardized, validated questionnaires that are completed by patients which

measure PROs, such as a person’s perspective on their health, well-being or symptoms (50,

51). Many such measures were originally designed for assessing treatment effectiveness in

the context of clinical trials (52), but are now used more widely to assess patient perspectives

of care outcomes (51), and to aid management of individual patients or parents (53). P(ar)

Parental outcomes

HRQOL

Psychosocial functioning

- Anxiety- Depression- Distress

Parental mediating factors

Parental perceptionsof child vulnerability

Coping

Parental child-rearing attitudes

Child factors

Environmental factors

Parental predispositions

Personality

Life-events

Parental chronic disease

Socialsupport

Practical issuese.g. work

Chronic diseaseof the child

Child psychosocial functioning

Sociodemographic variables

Gender

Parents

General introduction

13

1ROMs are therefore increasingly used to facilitate communication between patients/parents

and healthcare professionals during a consultation (54), or within multidisciplinary teams and

between professionals (55). PROMs completion prompts patients to reflect on their health

and gives them permission to raise issues with healthcare professionals (56). Goals of clinical

applications of the use of PROMs are monitoring (e.g. HRQOL or symptoms) or screening (e.g.

psychosocial problems), to promote patient-centered care.

In this thesis, several ParROMs are used to measure parental outcomes (figure 2). For anxiety

and depression, the Hospital Anxiety and Depression Scale (HADS) (57) is used, for HRQOL

the TNO-AZL Questionnaire for Adult’s Health-Related Quality of Life (TAAQOL) (58), and for

parental distress, we developed the Distress Thermometer for Parents (DT-P).

Parent Reported Outcome Measures

HADS

Parental outcomes

HRQOL

Psychosocial functioning

- Anxiety- Depression- Distress

TAAQOL

DT-P

Figure 2. Parent Reported Outcome Measures in relation to Parental Outcomes

Aim and outline of Part 1: Parental psychosocial functioning

Attention for parental outcomes (e.g. levels of anxiety and depression, HRQOL and distress)

is essential in a pediatric setting (59), because of its relationship with child physical health,

adherence to treatment, and child psychosocial functioning. Therefore, in the benefit of the

parent, but also of the child with a chronic disease, insight in the psychosocial functioning

of parents (both fathers and mothers) is an important first step in developing and providing

interventions to reduce psychosocial problems in parents. Literature on parental anxiety and

depression in pediatrics is scarce and focused mainly on specific illnesses, investigated only

small samples of mainly mothers and associated factors were hardly reported. Consequently,

part one of this thesis (Chapter 2, see also figure 3) describes anxiety and depression levels in

a large group of mothers and fathers of children with a variety of chronic conditions. We aimed

to compare these levels to reference groups of Dutch mothers and fathers, and to assess which

Chapter 1

14

parental and child variables are associated with parental anxiety and/or depression, adding

knowledge to the conceptual model in figure 1.

Figure 3. Outline of part 1 of this thesis

Aim and outline of Part 2: Development of a ParROM for parental distress

Healthcare professionals need to know how parents are doing and whether they need or

want support, because professional support for parents is important to successfully cope with

their situation of having a child with a chronic disease. By providing parents with adequate

interventions, their well-being, and as a consequence the well-being of their chronically ill

child, can be improved. However, in pediatric clinical practice, screening for parents who are

experiencing psychosocial problems or who are at risk for distress can be difficult and time-

consuming. Currently, PROMs used for parents are usually generic PROMs, measuring e.g.

HRQOL or anxiety and depression, and do not address the specific everyday problems parents

of a child with a chronic disease may face. For example, the legacy instrument ‘Hospital Anxiety

and Depression Scale’ (HADS) (57) is developed for adult patients and not for parents of a child

with a chronic disease. Therefore, the use of a screening ParROM for parents in clinical pediatric

practice is useful. No short screening ParROM was available to detect distress and everyday

problems in these parents and to provide points of reference for intervention. In addition, only

with representative normative data of Dutch parents for such a screening ParROM, a reliable

comparison can be made between parents of a child with a chronic disease and parents of a

healthy child.

Part two of this thesis (chapters 3 and 4, see also figure 4) focuses therefore on how we

can measure and screen parental distress and everyday problems in parents in an efficient and

General introduction

15

1reliable way and encompasses the development of a new ParROM; the Distress Thermometer

for Parents (DT-P). Chapter 3 describes the development of the DT-P and aimed to examine

its psychometric properties (internal consistency and validity) in a sample of parents with a

chronically ill child and to determine a cutoff-score to identify distressed parents. In Chapter 4,

we report on Dutch normative data of the DT-P and assess the internal consistency and known-

groups validity of the DT-P in the general Dutch population.

Figure 4. Outline of part 2 of this thesis

Aim and outline of Part 3: Outcome studies of the Distress Thermometer for Parents

The availability of the DT-P as a generic screening ParROM provides us with the opportunity to

study how parents of specific groups of children in pediatrics score on this ParROM, compared

to parents of healthy children. Literature on distress, and everyday problems specifically, is

scarce.

Therefore, part three of this thesis (chapters 5 and 6, see also figure 5) compares the

outcomes of the DT-P in specific groups of parents with reference parents of healthy children.

Chapter 5 describes these comparisons in mothers and fathers of children with Down

syndrome. We aimed to determine whether clinical distress and everyday problems were more

frequent in mothers and fathers of children with Down syndrome than in reference parents,

and whether clinical distress and everyday problems differed between mothers and fathers

in parent couples. In Chapter 6, the DT-P outcomes in mothers and fathers of children with

intestinal failure dependent on Home Parenteral Nutrition (HPN) are compared with reference

parents, as well as their HRQOL and levels of anxiety and depression.

Chapter 1

16

Figure 5. Outline of part 3 of this thesis

Aim and outline of Part 4: Implementation and feedback of PROMs and ParROMs in daily clinical care; the KLIK PROM portal

A tool to administer PROMs and ParROMs in clinical practice is the KLIK PROM portal. KLIK

(in Dutch: Kwaliteit van Leven In Kaart, Quality of Life in Clinical Practice, www.hetklikt.nu) is

developed by the Psychosocial Department of the Emma Children’s Hospital of the Amsterdam

UMC (60, 61). Pediatric patients, parents and adult patients complete age-appropriate

PROMs and ParROMs about their HRQOL, symptoms or psychosocial functioning, prior to the

outpatient clinic consultation. Answers are transformed into an electronic PROfile, the KLIK

ePROfile, to be discussed by the healthcare professional. In the KLIK portal, many users can

complete PROMs. Children aged ≥8 years can complete PROMs themselves (self-report). When

the child is younger or not able to complete PROMs, the parent can complete PROMs about the

child (proxy-report), e.g. regarding his or her HRQOL. In addition, parents can complete PROMs

about themselves, ParROMs, the focus of this thesis.

The healthcare professional discusses the KLIK ePROfile with patients and parents during

the consultation, to monitor well-being over time, detect problems early and provide tailored

advice and interventions. After the effectiveness of the KLIK PROM portal was shown in several

studies (62, 63), the implementation of KLIK in clinical practice started in 2011. The development

and implementation of the KLIK portal in different hospitals and departments has been a long

process. It is important to describe our experiences with the implementation process of KLIK in

pediatric populations, so that others can learn from our experience. Therefore we will describe

the implementation of KLIK following the recommendations of the International Society for

Quality of Life Research (ISOQOL) (64).

To successfully implement a screening ParROM as the DT-P in clinical practice, providing

healthcare professionals, and patients and parents themselves, with clear feedback regarding

General introduction

17

1the answers and scores on the PROM is essential. Both patients and clinicians endorse the value

of PROMs, but they also report challenges interpreting the meaning and implications of PRO

data (65). These challenges result in part from the lack of standardization in how PROMs are

scored and scaled, and in how the data are reported. The challenges in interpreting PRO results

limit patients’ and clinicians’ use of the data in clinical practice (65).

The KLIK ePROfile, based on the input from healthcare professionals (60, 61), initially

consisted of literal representations of the individual PROM items in European traffic light colors

(red, orange, green) and one graph. Over the course of implementation, the KLIK ePROfile

evolved into a broader spectrum of feedback options. Since KLIK is one of the world-leading

PROM portals in pediatrics, it is useful to describe these different forms of feedback of PROMs

and ParROMs we have built in the KLIK portal, including the DT-P, and the tools that we have

developed to aid the interpretation.

Part four of this thesis (chapters 7 and 8, see also figure 6) focusses on the implementation

of electronic PROMs and ParROMs in pediatric clinical practice using the KLIK PROM portal,

where Chapter 7 describes this implementation process in line with the methodological

recommendations and decisions described in the ISOQOL guidelines. In Chapter 8, we aimed to

describe the different ways information of PROMs and ParROMs is being fed back to healthcare

professionals using the KLIK PROM portal.

This thesis ends with Chapter 9; a general discussion including a reflection on the main

findings, methodological considerations, clinical implications, implementation of PROMs and

ParROMs in clinical practice and directions for future research.

Figure 6. Outline of part 4 of this thesis

Chapter 1

18

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