Health Care Services for Adults With ADHD: Patient Satisfaction and the Role of Psycho-Education

Abstract

Objective: To evaluate health care experiences of adults with ADHD and to identify predictors for patient satisfaction. Method: Multisite, questionnaire-based survey in a cohort of adult patients diagnosed and treated for ADHD in the Bergen area of Western Norway between 2005 and 2011. Results: Among the 171 included patients, only 61 (35.7%) reported being satisfied to a large or very large extent with the received health care. The strongest predictor for overall satisfaction, independent of duration, medication, and reported outcome of treatment, was whether they were satisfied with the information they had received from clinicians regarding ADHD and treatment options. Patients who reported that they had been offered other treatments in addition to pharmacotherapy were generally more satisfied. Conclusion: Our results emphasize the importance of consistent information routines as part of ADHD management. More teaching and training about ADHD for clinicians working in adult psychiatric health services may be needed.

Keywords

adult ADHD patient reported outcome health service use treatment

ADHD is a common neurodevelopmental disorder characterized by pervasive symptoms and impairment that persist into adulthood in about 30% to 60% of children with the disorder (Kessler et al., 2005). The prevalence of ADHD in adults in cross-sectional studies has been estimated to be around 2% to 4% (Fayyad et al., 2007; Kessler et al., 2006). Guidelines including the life span aspects of ADHD have appeared mainly during the last decade, and formal approval of ADHD medication for use in adult patients is even more recent and is still lacking in many countries (Kooij et al., 2010). Although pharmacological treatment is effective in reducing ADHD symptoms in children and adults (Adler et al., 2011; Adler, Spencer, McGough, Jiang, & Muniz, 2009; Faraone & Glatt, 2010; Fredriksen et al., 2014; Olfson, Marcus, Zhang, & Wan, 2007), nonpharmacological treatment options are increasingly demanded. Even though studies are emerging in this field, so far they have been scarcely implemented in clinical practice (Vidal et al., 2013).

Studies on the long-term outcome of ADHD highlight the importance of continuing treatment and maintaining stable patient engagement within services. Yet among adolescents and adults there are high drop-out rates (McCarthy et al., 2009; Young, Murphy, & Coghill, 2011). In the United Kingdom, the National Institute for Health and Care Excellence (NICE) Clinical Guidelines (NICE Clinical Guideline 72, 2009) recommend the development of specialized services for the treatment of adult ADHD, including drug-monitoring service, psychological treatment services, and specialist services for the diagnosis of ADHD in adults.

It is important to include the perspectives of service users in health care evaluation, quality indicators, and performance. Patient-reported experiences have been found to be more useful measures of quality of care than measures only including clinician and referrer indicators (Shipley, Hilborn, Hansell, Tyrer, & Tyrer, 2000). Feedback from patients can be used to monitor quality of health care. The assessment of patient satisfaction may also be a useful component of individual care planning (Macpherson et al., 1998). Patient-centered health services are currently emerging in several European countries (Future Hospital Commission, 2013; National Health and Hospital Plan in Norway, 2014-2015). Satisfaction with health care delivery has been linked to higher patient compliance and better treatment outcomes (Druss, Rosenheck, & Stolar, 1999; Holcomb, Parker, Leong, Thiele, & Higdon, 1998). Particularly in psychiatric care, information about diagnosis and treatment has been identified as an important determinant of overall patient satisfaction (Johnsen, Oysaed, Bornes, Moe, & Haavik, 2007; Ostby-deglum & Dahl, 2004).

In Norway, the first formal guidelines for the assessment and treatment of ADHD over the life span appeared in 2005 (2nd ed., December 2014.) However, the health care service for adults with ADHD has so far not been systematically evaluated. As far as we know, this is true also for other countries.

To this end, we conducted a survey in a cohort of adult ADHD patients who had received health service from outpatient clinics in a Norwegian area of about 250,000 inhabitants between 2005 and 2011. The main aims of the study were to evaluate adult ADHD patients’ satisfaction with their health services, to explore predictors for their satisfaction, and to identify factors that might improve health services for persons with ADHD.

Method

Sample

The data in this patient survey were collected from October 2012 to December 2013. Hospitals and outpatient clinics in Bergen use a common patient information database system, Distributed Information and Patient Data System in Hospitals (DIPS; DIPS ASA, n.d.). This database was used to identify all adult patients who had received a main diagnosis of hyperkinetic disorder (i.e., F90.0, F90.1, F90.8, F90.9, and F98.8) according to the International Classification of Diseases, 4th edition, 2010 (World Health Organization, 2003), at four outpatient clinics in Bergen, Norway, in the period from January 1, 2005, to December 31, 2011.

The criteria for hyperkinetic disorder in ICD-10 are more narrowly defined than the ADHD criteria in Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V; American Psychiatric Association [APA], 2013), as the ICD-10 requires the presence of both inattentive and hyperactive/impulsive symptoms, and hence does not include the inattentive subtype of ADHD. In Norway, the formal diagnostic coding is made according to ICD-10. However, in clinical practice it is widely accepted to base the diagnostic assessment of ADHD on the Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; APA, 1994; and now DSM-5) criteria, and then “translate” into ICD-10 codes. The F90.0 diagnostic code is thus used both for the combined, inattentive and hyperactive/impulsive subtypes of ADHD (Health Department in Norway, 2014).

Initially, a total of 648 adult outpatients were identified by DIPS. After excluding patients registered as deceased (0.3%, n = 2), patients without a registered mailing address, and patients whose main diagnosis was not ADHD (8.8%, n = 57), 589 patients remained eligible for invitation.

Design

All identified, eligible patients were contacted by postal mail. The questionnaires, along with an information letter, a consent form, and a postage-paid return envelope, were mailed to their home address. Patients who did not respond within 3 weeks received a reminder by telephone. If they still did not submit their questionnaires after this reminder, they were defined as nonrespondents.

Measures

The questionnaire used was designed specifically for this study. The first part included items on sociodemographic data (i.e., age, gender, and occupational status) and questions about type of treatment received (i.e., onset and duration of medical treatment, reasons for discontinuing medication, other treatment received).

The second part of the questionnaire was the patient satisfaction survey. These questions were compiled from The Psychiatric Outpatients Experience Questionnaire (POPEQ; Garratt et al., 2006), and from The Generic Short Patient Experiences Questionnaire (GS-PEQ; Sjetne, Bjertnaes, Olsen, Iversen, & Bukholm, 2011). To ease the burden of answering too many questions, we selected only questions most relevant for our study.

In the survey part, patients were asked to evaluate different aspects of the assessment and treatment they had received, for example, how satisfied they were with the information they received, to which degree assessment and treatment had been helpful to them (in everyday life functioning, work and school performance, interpersonal relationships, self-esteem, etc.), and to what extent their general quality of life had increased. The survey part comprised five groups of questions with a total of 25 items with 5-point Likert-type scales, from not at all (= 1), to a small extent, to a moderate extent, to a large extent to to a very large extent (= 5). In addition, “I don’t know” was a response option. Out of these, we calculated both mean scores of satisfaction/perceived effect, and proportions of patients responding to the different categories.

An example of such a group of questions was “What do you think of the information you got from your therapist in the clinic . . . ?” (a) “ . . . . about ADHD,” (b) “ . . . about medication,” (c) “ . . . about other treatment alternatives.” Another example was “How much did medication help you . . . ?” (a) “ . . . . in relation to yourself and your self-esteem,” (b) “ . . . in relation to your nearest,” (c) “ . . . . to improve practical functioning in everyday life,” (d) “ . . . to improve your functioning at work or in school?” The questionnaire also included variables related to quality of life and follow-up. Patients were also asked if they had expectations that were not met, and if so, what they missed the most.

Ethics

The data protection officer for Research at Haukeland University Hospital was notified about the project (Notification No. 2012/2953) and the responsibility for privacy protection in accordance with regulations was executed. Patients received written and oral information about the project and that participation was voluntary and assured of confidentiality. The local institutional review board (IRB No. 3 FWA00009490, IRB00001872) was informed about the study, but as the study was judged to be part of routine clinical management of this patient group, no further permissions were needed.

Statistical Analysis

Descriptive statistics with chi-square tests and independent-sample t test were used for the comparison between respondents and nonrespondents, and between subgroups of responders. Logistic regression analyses were used for predicting patient satisfaction, with a first step analyzing independent variables one by one, and further analyses with a model adjusting for other significantly related variables. All analyses were carried out with PASW Statistics 18/22 (SPSS Inc, 2010).

Results

Response Rates and Sociodemographic Characteristics

Of 589 posted invitations, 36 were returned nondelivered by the post (due to wrong or not identifiable addresses) leaving a number of 553 assumed received invitations. Of these, 171 patients finally returned the questionnaires, yielding a response rate of 30.9%. The numbers of patients finally included from each of the four sites were 41, 31, 46, and 53, respectively. Only 14.5% (n = 80) of the patients returned their questionnaires before a reminder by telephone. Another 20.3% (n = 112) were positive to the study when receiving the reminder, but did still not return the questionnaire. Only 9.0% (n = 50) of the patients stated explicitly that they did not want to participate in the study.

The mean age for included patients was 35. 1 years (SD = 9.3, range = 20-56). On average, nonrespondents were 2 years younger (M year of birth 1977.6 vs. 1979.7, p = .011). The majority (56.7%, n = 97) of the included patients were female while nonrespondents tended to be male (52.4%, n = 200; p = .05). About one third of the patients reported being in work as their main occupational status at the time of inclusion (35.1%, n = 60), and a total of 80 patients (46.8%) were in some kind of work while 37.4% (n = 64) were either on sick leave, receiving sickness benefits, or rehabilitation support at the time of survey (see Table 1).

Table 1.

Sociodemographic Characteristics of Included Patients.

	n	%
Gender
Male	74	43.4
Female	97	56.7
Age (M/SD, in years)	35.1/9.2	9.3
Age group, in years (M)
18-24	26	15.2
25-34	62	36.3
35-44	49	28.7
45+	34	19.9
Occupational status
In work	60	35.1
Student	10	5.8
Sick leave	8	4.7
Disability pension	22	12.9
Unemployed	4	2.3
Rehabilitation	36	21.1
Combination of above categories	13	9.2
Other/missing information	18	12.7
Time period of assessment
Start before 2009	74	43.3
Start after 2009	97	56.7
ADHD diagnosis before age 18	21	12.2
Duration of contact with clinic, in days (M/median, range)	554/354, range = 19-5,049
Offered medical treatment	160	93.6
Tried medication	155	90.6
Uses medication at time of inclusion/response	95	56.2
Offered other treatment than medication
No	108	66.3
Yes	35	21.5
Don’t know	20	12.3
Missing	8
Missed more health care
No	34	22.2
Yes	90	58.8
Don’t know	29	19.0
Follow-up afterwards
General practitioner	97	56.7
Specialist health care	33	19.3
Community health service		11.6
ASRS Total score (M/SD)	44.9/13.6
ASRS Inattentive score (M/SD)	23.7/6.9
ASRS Hyperactive/impulsivity score (M/SD)	21.4/6.9

Note. ASRS = Adult ADHD Self-Report Scale.

Clinical and Treatment Characteristics

Of 171 included patients, only 12.3% (n = 21) had received an ADHD diagnosis during childhood (i.e., before the age of 18). Half of the patients (53.2%, n = 91) answered “yes” to a question whether they had also been treated for another psychiatric disorder than ADHD (not further specified). Most of the patients had tried medication (90.6%, n = 155). About half of the patients (55.6%, n = 95) reported that they were still using medication against ADHD symptoms at the time of answering the questionnaire. The most commonly offered medication, and still used at the time of inclusion, was methylphenidate in different formulations.

Among patients who had used, and then stopped taking medication (n = 66), the most commonly reported duration of pharmacological treatment was 1 year or less (57.7%, n = 30) while 21.2% (n = 11) used medication between 1 and 2 years, and the same number of patients for 2 years or more (valid percent reported, missing data for 14 patients). The most frequently reported reasons for discontinuing medication were side effects (62.1%, n = 41), lack of effect (27.3%, n = 18), and forgetting to take the medicine (15.2%, n = 10). Twelve patients reported that they did not need medication anymore, and 11 that they were against medication for ADHD.

Only 20.5% (n = 35) reported that they had been offered other treatment than medication, for example, individual psychotherapy (12.9%, n = 22), or group psychotherapy (2.3%, n = 4). Fifty patients (29.2%) had tried alternative treatments, like special diets (9.4%, n = 16), or other nutritional supplements (11.1%, n = 19).

The most common type of follow-up, after termination of the contact with the clinics, was contact with a general practitioner (GP; 56.7%, n = 97). The frequency of consultations with the GP varied; 33.5% reported more than annual visits, 15.9% annual visits, 15.9% more seldom visits than annually, and finally, 29.3% reported no visits related to ADHD after the end of outpatient treatment.

Patients’ Evaluation of Received Health Service

Among the 141 patients answering the question about overall satisfaction with the treatment received, 61 (35.7%, valid percent = 44.2%) reported being satisfied to a “large” or “very large” extent” (M degree of satisfaction = 3.05, SD = 1.46), and 76 patients (45.0%) reported that their total quality of life was increased to a “large” or “very large” extent. Between 40% and 50% of the patients reported that assessment and treatment had been helpful in increasing their knowledge about ADHD, their self-esteem, their daily life functioning, and performance at school or work. Medical treatment was rated as particularly helpful for increased functioning (see Table 2).

Table 2.

Patients’ Evaluation/Satisfaction of Received Health Service.

	“Not at all”	“To a small extent”	“To a moderate extent”	“To a large extent”	“To a very large extent”	“Don’t know”	Sum of “to a large extent” and “to a very large extent”
Patients’ rating of satisfaction/effect of interventions	Valid % (n)
1. What do you think of the information you got from your therapist in the clinic . . . ? (n)
(a) “ . . . . about ADHD” (167)	18.0 (30)	18.0 (30)	10.2 (17)	26.3 (44)	22.8 (38)	8 (4.8)	49.1 (82)
(b) “ . . . about medication” (161)	24.8 (40)	17.4 (28)	16.8 (27)	18.0 (29)	12.4 (20)	10.6 (17)	30.4 (49)
(c) “ . . . about other treatment alternatives” (163)	20.2 (33)	20.2 (33)	15.3 (25)	19.6 (32)	17.2 (28)	12 (7.4)	36.8 (60)
2. How much did assessment and treatment help you . . . ? (n)
- “ . . . to improve practical functioning in everyday life?” (165)	21.2 (35)	13.9 (23)	17.0 (28)	21.8 (36)	22.4 (37)	3.6 (6)	44.2 (73)
- “ . . . to improve your functioning at work or in school?” (163)	25.8 (42)	8.0 (13)	16.6 (27)	14.7 (24)	26.4 (43)	8.6 (14)	41.1 (67)
3. How much did medication help you . . . ? (n)
- “ . . . to improve practical functioning in everyday life?” (157)	17.8 (28)	8.9 (14)	19.1 (30)	21.0 (33)	31.8 (50)	1.3 (2)	52.8 (83)
- “ . . . to improve your functioning at work or in school?” (158)	17.7 (28)	8.2 (13)	15.2 (24)	17.7 (28)	35.4 (56)	5.7 (9)	53.1 (84)
4. How satisfied where you with the offered health care overall? (141)	21.3 (30)	15.6 (22)	16.3 (23)	24.3 (33)	19.9 (28)	3.5 (5)	44.2 (61)
5. How much has your total quality of life changed? (169)	19.5 (33)	17.8 (30)	13.6 (23)	20.7 (35)	24.3 (41)	4.1 (7)	45.0 (76)

Half of the patients were satisfied “to a large or very large extent” with the information received from clinicians about ADHD, but only about a third of the patients were equally satisfied with the information about treatment options in general and medical treatment in particular (see Table 2). More than half of the patients (58.8%, n = 90) reported that they were missing some health care during the treatment period at the outpatient clinics (see Table 1). Most of them missed more information about ADHD, both for themselves and for family members (24.4%, n = 22), about medication alternatives 11.1% (n = 10), and about other nonpharmacological treatment alternatives 17.8% (n = 16), all in valid percent.

There was a significant correlation between satisfaction with received information about ADHD and perceived effect/outcome of assessment and treatment, that is, improved functioning in daily life (odds ratio [OR] = 2.9, confidence interval [CI] = [1.6, 5.5], p = .001), improved functioning in work or school (OR = 4.1, CI = [2.1, 8.0], p < .001), and improvement of total quality of life (OR = 8.4, CI = [4.2, 16.8], p < .001). (See Note under Table 3.)

Table 3.

Factors Predicting Overall Satisfaction With the Received Health Service: Results From Logistic Regression Analyses With the Outcome Being “Satisfied to a Large or Very Large Extent With the Received Health Service.”

Independent variables	Unadjusted OR	95% CI	p	Adj OR	95% CI	p
Gender
Male	1 (ref)
Female	1.59	[0.84, 3.02]	.158	1.40	[0.59, 3.34]	.437
Age (pr. year of age)	1.05	[1.01, 1.09]	.007	1.06	[1.01, 1.11]	.015
Age group, in years
18-24	1 (ref)
25-34	1.36	[0.47, 3.95]	.568
35-44	2.11	[0.72, 6.21]	.174
45+	3.75	[1.21, 11.7]	.022
Occupational status
In work/studying	1 (ref)
Not in work	1.11	[0.59, 2.10]	.738
ADHD symptoms at inclusion (ASRS score, M)
Total scale	1.002	[0.98, 1.03]	.845
Inattentive subscale	1.013	[0.98, 1.05]	.511
Hyperactive/impulsive scale	0.998	[0.95, 1.05]	.945
Time period of assessment
Start before 2009	1 (ref)
Start after 2009	0.85	[0.45, 1.59]	.606
ADHD diagnosis before age 18 years	0.70	[0.24, 2.01]	.503
Duration of contact (pr. month increase)	1.02	[1.00, 1.03]	.033	1.01	[0.99, 1.03]	.339
Offered medical treatment	1.14	[0.27, 4.72]	.859
Tried medication	0.83	[0.28, 2.44]	.728
Uses medication at time of inclusion/response	1.55	[0.81, 2.95]	.187
Duration of medical treatment	1 (ref)
>1 year	0.96	[0.32, 2.87]	.945
Offered other treatment than medication
No	1 (ref)
Yes	2.66	[1.25, 5.67]	.011	2.49	[0.83, 7.41]	.102
Follow-up after ended contact with the clinic (any kind vs. no follow-up)	1.02	[0.54, 2.00]	.944
Satisfaction with information received^a
About ADHD	10.5	[4.85, 22.8]	< .001	11.2	[4.59, 27.1]	< .001
About treatment options	11.0	[5.20, 23.3]	< .001
About medication	6.82	[3.25, 14.3]	< .001
Perceived effect of assessment and treatment^b on improving
Daily life functioning	2.84	[1.49, 5.42]	.002
Performance in work/school	2.94	[1.53, 5.62]	.001	2.49	[1.06, 5.82]	.036
Total quality of life	9.15	[4.39, 19.0]	< .001

Note. The following variables were included in the adjusted model: Gender, age, duration of contact in months, having been proposed other treatment than medical treatment, satisfaction with received information about ADHD, perceived improvement of performance in work/school. OR = odds ratio; CI = confidence interval; adj OR = adjusted odds ratio; ASRS = Adult ADHD Self-Report Scale. Italics indicate statistical significance.

Independent variables here analyzed as categorical variables (i.e., OR for those being satisfied to a large or very large extent vs. those who were less satisfied). The adjusted analysis includes only the first of these three variables, “satisfaction with information about ADHD.” Corresponding analyses with each of the other two variables yielded very similar results, that is, “satisfaction with information about treatment options” (adj OR = 11.3, CI = [4.68, 27.3], p < .001) and “satisfaction with information about medication” (adj OR = 6.55, CI = [2.71, 15.8], p < .001) with corresponding OR for “perceived effect on performance in work/school” adj OR = 4.48 (CI = [1.86, 10.8], p = .001), and adj OR = 3.03 (CI = [1.36, 6.79], p = .007), respectively. The other independent variables were relatively unchanged in these adjusted models.

Independent variables here analyzed as categorical variables (i.e., OR for those reporting “much” or “very much” improvement vs. those reporting less improvement). The adjusted analysis includes only the variable “improvement of functioning in school or work.” Corresponding analyses with each of the other two variables, that is, “improvement of daily life functioning” (adj OR = 1.80, CI = [0.79, 4.10], p = .160) and “improvement of total quality of life” (adj OR = 5.98, CI = [2.39, 15.0], p < .001) yielded corresponding adj OR for “satisfaction of information of ADHD” of 12.4 (CI = [5.15, 29.8], p < .001) and 7.37 (CI = [2.90, 18.8], p < .001), respectively. The other independent variables were relatively unchanged in these adjusted models.

There was no difference in overall satisfaction between patients who had tried medication against ADHD (n = 122, M score = 3.00) compared with those who had not tried medication (n = 13, M score = 3.07, p = .138), nor between patients still taking ADHD medication at the time of inclusion versus those who had stopped taking medication (M satisfaction score 3.3 vs. 2.8, p = .095). However, patients who answered “yes” to the question “Were you offered any other treatment than medication for ADHD?” (n = 35) were significantly more satisfied than patients who answered “no” to the same question (OR = 2.7, p = .011; see Table 3).

Predictors for Overall Satisfaction With Received Health Services

A third of the patients (valid percent = 44.2%) were satisfied “to a large extent” (24.3%) or “to a very large extent” (19.9%) with the offered health care overall. To explore if there were specific factors related to patients’ overall satisfaction, we performed logistic regression analyses. The outcome was overall satisfaction with the assessment and treatment received at the outpatient clinic, defined as being satisfied “to a large extent” or “to a very large extent” versus the other categories “not at all,” “to a small extent” and “to a moderate extent” (see Table 3).

Preliminary analyses showed no significant correlation between overall satisfaction and the following factors when examined one by one: gender, occupational status, site or time period of treatment, having tried or still using medication for ADHD, or ADHD symptom severity (Adult ADHD Self-Report Scale [ASRS] score) at the time of survey.

Age was positively correlated to degree of satisfaction (OR = 1.05 per year, p = .007, and OR = 2.1, p = .034, for patients older than 30 years compared with 29 years or less). Duration of contact with the clinic also seemed to be positively correlated to degree of overall satisfaction when time was analyzed as a continuous variable (OR = 1.02, p = .033 per month increased). However, there was no clear “dose-response” pattern when looking into different categories of duration of treatment.

We found a strong correlation between overall satisfaction with the health services and satisfaction with the received information; about ADHD in general (OR = 10.5, CI = [4.85, 22.78], p < .001), about treatment options for ADHD (OR = 11.0, CI = [5.2, 23.3], p < .001), and about medical treatment in particular (OR = 6.8, CI = [3.3, 14.3], p < .001). There was also a significant and positive correlation between overall satisfaction and whether patients had been offered other treatment than medication (OR = 2.7, CI = [1.3, 5. 7], p = .011).

Patients who reported most improvement of functioning in daily life, work or school performance, and total quality of life were also significantly more satisfied with the received health care overall compared with those who reported less improvement (see Table 3). In an adjusted regression model including the described significantly related factors, the most important predictor for overall satisfaction about the received health service, was the degree of satisfaction with the information they received about ADHD (OR = 11.2, CI = [4.59, 27.1], p < .001).

Discussion

There were three main findings in this multisite survey in a cohort of adult ADHD patients. First, among the 171 patients, only 61 reported that they were satisfied to a large or very large extent with the received health service at the clinics. Second, the strongest predictor for overall satisfaction was whether patients were satisfied with the information they had received from clinicians regarding ADHD and treatment options. This finding was true also when adjusting for patients’ evaluation with outcome of treatment. There was also a strong correlation between overall satisfaction and having been offered other treatment options than medication. Third, more information about ADHD and treatment options was the single most suggested factor from patients themselves for improving health care, with more and longer follow-up as the second most reported unmet need.

The correlations between satisfaction with information, reported treatment outcome, and overall satisfaction may reflect that patients satisfied with both treatment and information are generally more satisfied, across different domains in life. However, the finding from the regression analysis, showing that satisfaction with information is relatively more important than perceived outcome in predicting overall satisfaction, indicates a more specific role for information in patients’ overall experience with health care.

These findings are interesting and may have direct clinical implications in several ways. Systematic psycho-education, with information about ADHD, treatment options, and coping strategies, has been shown to improve attention deficits and reduce hyperactivity-impulsivity symptoms in adults with ADHD. This intervention also seems to reduce comorbid symptoms like anxiety and depression, which are important for the functional impairment in this patient group (Vidal et al., 2013). Clinicians should be aware of the impact that psycho-education alone may have on patients’ symptoms, functioning, and quality of life. Psycho-education is already recommended as a first step in the treatment of most psychiatric disorders, including ADHD. In Norway, it is furthermore defined as a patient right in the Patient rights law § 3-2.

Still, according to this survey, the majority of adult ADHD patients missed more information about ADHD and different treatment options. By increasing the amount and quality of information presented to psychiatric patients, it is possible to improve their factual knowledge and satisfaction with health care in routine clinical settings (Johnsen et al., 2007). It is important that clinicians treating ADHD not only are aware of this but also have adequate knowledge about ADHD, so that they are able to provide relevant information about ADHD to their patients. This survey was conducted in the first cohort of adult ADHD patients after the official guidelines were published in Norway, and knowledge among clinicians may since have increased. Still, the results are a reminder of the importance of psycho-education in treating patients with ADHD.

Only 20% reported that they had been offered other treatment options than medication. As the median duration of contact with the clinic was around 1 year, one would presume that most patients had received some kind of supportive and/or psycho-educative care in addition to pharmacological treatment. The patients’ perception that medication is the dominating treatment focus and that other treatment options are lacking, does, however, reflect the fact that nonpharmacological treatment options still are poorly developed and implemented in today’s health service for adults with ADHD. ADHD is still a relatively recent diagnosis in adult psychiatry. There is probably a need for targeted teaching and training about ADHD and treatment options for clinicians working in adult psychiatric health services.

Limitations

There are several limitations both to the generalizability and the causal inferences from this data. The low response rate, causing a small sample size despite using reminder by telephone, is a clear limitation of this postal study. It is important to assess the potential influence of nonresponse bias (Asch, Jedrziewski, & Christakis, 1997). Our study shows that as much as 20.3% (n = 112) of the patients expressed an intent to submit their response by the time of the reminder but still did not return the questionnaire. This indicates that the response rate could have been higher with telephone interview. Still, the response rate is similar to that observed in postal surveys of patients with other psychiatric disorders or somatic diseases (Horne, Parham, Driscoll, & Robinson, 2009; Sjetne et al., 2011). Nonrespondents’ characteristics and experiences show that the low response rate in the postal survey does not necessarily cause serious bias, and the generalization of the survey results to the population may thus be justified (Dahle, Iversen, Sjetne, & Oltedal, 2008). Some studies suggest that the nonresponse impact is relatively small (Guldvog, Hofoss, Pettersen, Ebbesen, & Ronning, 1998; Iversen, Dahle, & Holmboe, 2009), and that there are only minor differences between postal respondents and nonrespondents.

This study was done with patients in outpatient clinics in a defined region of Norway, but it is probably representative for the country in general, as health care in Norway is quite homogenously organized. The results are not necessarily transmissible to other countries, but we could expect that it is not very different from other Scandinavian countries and other countries with a well-developed psychiatric health care service. We did not have information about the level of training for practitioners, neither about the level of community services available to adult patients with ADHD. The variation of these factors between clinicians, clinics, and regions would most certainly influence patient satisfaction.

The duration of contact with the clinic varied considerably between patients, from a few weeks to several years. Furthermore, we did not have access to detailed information about the frequency and pattern of follow-up in this time period. Some of the patients received their assessment and treatment several years ago, whereas some had just recently ended their treatment at the outpatient clinic. We found an initial positive correlation between duration of contact with the clinic and overall satisfaction, and many patients reported that they missed more follow-up after assessment and treatment initiation. However, this correlation was no longer significant when adjusted for treatment factors, like satisfaction with received information. We did not find any significant difference in degree of satisfaction between patients from the early study period compared with the later part.

Patient satisfaction surveys have some inherent limitations. Thus, Jenkinson, Coulter, Bruster, Richards, and Chandola (2002) argued that “overall satisfaction provides an overoptimistic evaluation of patients’ experiences of health care” (p. 339) and that more meaningful information is gained when patients are asked to report on specific aspects of their experience of care. Our study confirms that information is one of the important criteria for satisfaction with the health service (Crow et al., 2002).

Implications

This study shows that information about ADHD is important and highly predictive for satisfaction with health care service for adult persons with ADHD. Information to patients about the diagnosis, pharmacological treatment, and other treatment alternatives is an important part of psycho-education. There are few published efficacy studies of psycho-education in ADHD. Efficacy studies and evaluation of patient experiences are important to evaluate the quality of health services. Such studies are needed to inform us about the optimal use and the role of psycho-education in treatment.

The main implication of our study is that increased awareness and competence about ADHD and treatment among clinicians in adult psychiatry may have an independent and direct effect on patient satisfaction. This is important as patient satisfaction with health care delivery has been linked to higher patient compliance and better treatment outcomes. Further research is needed to examine the more specific usefulness of increasing such competence about ADHD treatment, both about pharmacological and nonpharmacological treatment options.

Conclusion

In this cohort of 171 adult patients with ADHD, only a third reported being satisfied to a large or very large extent with the received health services. The strongest predictor for overall satisfaction was whether patients were satisfied with the information they had received from clinicians, regarding ADHD and treatment options. There was also a strong correlation between overall satisfaction and having been offered other treatments than medication. The results are a reminder of the importance of psycho-education in the management of patients with ADHD and indicate that there is still a need for more teaching and training about ADHD for clinicians working in adult psychiatric health services.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project was supported by the Western Norway Regional Health Authority (2010) and the National Research Network for ADHD in Norway (2012).

Author Biographies

Berit Skretting Solberg, MD, is a child and adolescent psychiatrist at Betanien Hospital. She is interested in neuropsychiatry and issues related to developmental aspects, in particular ADHD.

Jan Haavik, MD, PhD, is a professor at the University of Bergen, Department of Biomedicine and leader of K. G. Jebsen Center for Research on Neuropsychiatric Disorders. He is also a psychiatrist at Haukeland University Hospital. He is interested in molecular mechanisms of the nervous system and clinical aspects of brain disorders, including ADHD.

Anne Halmøy, MD, PhD, is a clinical psychiatrist at Haukeland University Hospital. She is also an associate professor at the K. G. Jebsen Center for Research on Neuropsychiatric Disorders, University of Bergen. She is interested in developmental and cross-diagnostic aspects of psychiatric disorders, including ADHD and bipolar disorder.

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