Age-related differences in experienced patient-centred care among women with endometriosis

Abstract

Younger women with endometriosis report lower quality of life and seek more care. Patient-centeredness is a central part of quality of care. The aim of this study was to investigate if women younger than 35 years experience endometriosis care as less patient-centred than women 35 years and older. The ENDOCARE Questionnaire was sent to 1000 randomly selected women with verified endometriosis from 10 clinics in Sweden. Answers from 469 women were analysed using Mann–Whitney’s U-test and Spearman’s correlation. Our findings show that younger women experience care as less patient-centred regarding ‘Physical comfort,’ ‘Continuity,’ ‘Access to care,’ ‘Technical skills,’ and overall patient-centeredness score in comparison with older women. On the contrary, younger women experience more patient-centeredness in ‘Emotional support’. Positive correlations were found for age and ‘Access to care’ and ‘Technical skills’, while a negative correlation was found for age and ‘Emotional support’.

Impact Statement

• What is already known on this subject? There is a need for improvement of quality of endometriosis care. Patient-centeredness is an important part of care improvement work. Many factors have an impact on experienced patient-centeredness in endometriosis care, whereof age is one possible determinant. Given the impact of age on QoL and care seeking behaviour, age may also have influence on the experience patient-centeredness.

• What do the results of this study add? Our findings show that younger women experience their endometriosis care as less patient-centred than older women.

• What are the implications of these findings for clinical practice and/or further research? Our results highlight the need of improvement of endometriosis care, especially for younger women. The results contribute to the understanding of the experience of patient-centeredness, which may be used as a guidance to how healthcare recourses should be allocated. Further research is needed to identify other factors contributing to the experience of patient-centeredness. Future studies could also evaluate how different interventions can improve patient-centeredness.

Keywords:

• Endometriosis
• patient-centeredness
• ENDOCARE Questionnaire
• ECQ
• age

Introduction

Endometriosis is a chronic, inflammatory, oestrogen-dependent disease causing pain and infertility. Approximately, one out of 10 women of reproductive age has the disease (Viganò et al. 2004; Vercellini et al. 2014). The definition of endometriosis is the presence of endometrial glands and stroma outside the uterine cavity (Vercellini et al. 2014). A definitive diagnosis can be made by a positive histological biopsy or with transvaginal ultrasound and magnetic resonance imaging in cases with typical findings such as ovarian endometriomas and deep endometriotic lesions. Typically, it takes 7–13 years to be diagnosed (Hudelist et al. 2012; Dunselman et al. 2014; Staal et al. 2016; Han et al. 2018; Ghai et al. 2020; Grundström et al. 2020). Furthermore, endometriosis often impairs multiple dimensions of life, including intimate relationships, mental health and social life (Culley et al. 2013; Della Corte et al. 2020). Women with endometriosis experience reduced health-related quality of life (HRQoL) (Nnoaham et al. 2011; Marinho et al. 2018) and younger women with endometriosis express more symptoms, seek more care and report a lower HRQoL than older women (Lövkvist et al. 2016; Grundström et al. 2020).

Many women with endometriosis are discontented with the care they receive and in recent years the need to improve endometriosis care has been widely acknowledged (Culley et al. 2013; Dancet et al. 2014; Young et al. 2015; Lukas et al. 2018; As-Sanie et al. 2019; Rowe et al. 2021). To meet the emotional, social and physical needs and evaluate the quality of care from the patients’ perspective, it is valuable to collect information on patient-centeredness, which is a central part of quality of care (National Academy of Engineering and Institute of Medicine 2005; Chapron et al. 2019). It has been shown that providing patient-centred endometriosis care (PCEC) and paying attention to the particular PCEC dimensions ‘continuity,’ ‘information,’ and ‘respect’ could lead to better HRQoL (Apers et al. 2018).

Factors that can be linked to patients’ satisfaction and patient-centeredness in different medical fields have been studied to a limited extent and with scattered results. Educational level, health status, hospital size and age have been associated with patient satisfaction in different medical fields (Hall and Dornan 1990; Young et al. 2000; Hargraves et al. 2001).

There are probably several factors that have an impact on experienced patient-centeredness in endometriosis care, whereof age is one possible determinant. Given the impact on QoL and care seeking behaviour, it is reasonable to presume an effect of age on experience of patient-centeredness. There are to our knowledge no previous studies of patient-centeredness in different age groups within the field. Therefore, the aim of this study was to investigate if women younger than 35 years experience endometriosis care as less patient-centred than women 35 years and older.

Materials and methods

Participants and recruitment

The study has a cross-sectional design including data collected at one occasion. Women with confirmed endometriosis were recruited from 10 gynaecology clinics in Sweden. The clinics were selected to obtain a study population with a broad geographic distribution in Sweden. Six clinics were situated in middle sized regional hospitals, two were private outpatient clinics and two were endometriosis specialist clinics at university hospitals. Each clinic randomly identified 150 women that had been in contact with the clinic due to endometriosis during 2016–2020. Out of these 150 women, 100 were randomly selected to the final study population. All women were 18 years or older. An invitation letter was sent by post to 1000 women in September 2021. The invitation letter included study information and a QR-code linked to an online version of the ENDOCARE Questionnaire (ECQ). A reminder was sent to non-responders via post approximately three weeks after the first dispatch. The participants gave their written informed consent by completing the online survey.

The ENDOCARE Questionnaire

ECQ was designed to measure patient-centeredness in the care of women with endometriosis. It was published for the first time in 2011 by Dancet et al. (2011). The Swedish version of ECQ is a valid and reliable instrument (Grundström et al. 2021).

The instrument comprises two parts. Part I consists of 27 questions concerning demographic and clinical factors. Part II consists of 38 statements regarding different aspects of endometriosis care. The 38 statements can be divided into 10 dimensions of PCEC. Overall patient-centeredness score (PCS) can be calculated by estimating the mean value of PCS for all 10 dimensions of PCEC (Dancet et al. 2011).

Two different four-point Likert-response scales accompany the 38 statements. The first (A) of the two scales measures the experience of the aspect (‘Disagree completely’/‘Disagree’/‘Agree’/‘Agree completely’). The second scale (B) measures how important the patient evaluates the aspect (‘Not important’/‘Fairly important’/‘Important’/‘Of the utmost importance’) (Dancet et al. 2011).

ECQ generates three different outcome measures. The first outcome measure is ‘percentage of negative experiences’ (PNP) which can be calculated from answers in question A. PNP is presented on a 0–100 scale where higher scores indicate worse performance. The answers are coded as ‘disagree completely’ = 1, ‘disagree’ = 1, ‘agree’ = 0 and agree completely = 0. The second outcome measure is ‘mean important scores’ (MIS) which is calculated from answers in question B. MIS is presented on a 0–10 scale where a higher score indicates greater importance. Answers are coded as ‘not important’ = 0, ‘fairly important’=3, ‘important’=6 and ‘out of the most important’=10. The third outcome measure is ‘patient-centeredness scores’ that weights the performance and the importance of that statement according to the patient to estimate PCEC. PCS is presented on a 0–10 scale where a higher score indicates a higher PCEC (Dancet et al. 2011).

Statistical analysis

The sample size calculation was not based on the ECQ because it is a new instrument. Instead, the sample size calculation was based on another questionnaire, the Endometriosis Health Profile-30 (EHP-30), which was included in the online survey but not is used in this study. The minimum clinical difference of relevance for EHP-30 is 12.5 (van de Burgt et al. 2013). Therefore, with SD = 26.2, p = .05 and power = 80%, 70 participants per group were needed. We initially planned to compare three different age groups and estimated a response rate of around 30–40% and partly uneven distributions within the groups, resulting in the decision to send an invitation letter to 1000 women.

Participants who filled in less than 50% of part II, were excluded from further analysis (Dancet et al. 2011). In this study, two participants were excluded according to this criterion.

A low number of younger participants obliged us to divide the cohort into two instead of three age groups to ensure statistical power. The study population was therefore divided into two groups with 230 (49%) women <35 years and 239 (51%) women ≥35 years.

IBM SPSS Statistics version 28 (Armonk, NY) was used to analyse all data in the report. Data were not normally distributed whereas the analysis was performed using non-parametric tests. Categorical variables are presented with frequencies and percentages, whereas continuous variables are presented with medians and 25th and 75th percentiles. To enable comparison with studies presenting mean values, means and standard deviations were also presented. Chi-squared test and Fischer’s exact test were used for comparison of demographic categorical variables, and the Mann–Whitney U-test was used for the continuous variables. Further, PCS for each dimension, including overall PCS, was compared between the two age groups using the Mann–Whitney U-test. A correlation analysis was made using Spearman’s correlation test using PCS of all 10 dimensions and overall PCS, with age as a continuous variable. A p value <.05 was considered statistically significant.

The study was approved by the Swedish Ethical Review Authority on November 10 2020 (Dnr. 2020-0204).

Results

The online survey was completed by 471 women. Out of these, 469 contained evaluable answers, resulting in a response rate of 46.9%. A summary of demographic and clinical data is demonstrated in Table 1. More than half of the participants (54.8%) reported graduation from residential college/university with a particular predominance by participants ≥35 years (66.5%) compared with 42.6% in the group <35 years. Furthermore, most of the women (52.5%) in the study group reported working full time. Working full time was more common in the older age group (61.5%) than in the younger (43.0%). Further, 54.8% of the entire study population reported past or present mental illness with a preponderance of the younger age group compared with the older. Women <35 years reported a younger age at the debut of endometriosis symptoms than women ≥35 years. The mean value of patient’s delay, doctor’s delay and the diagnostic delay was 3.3, 6.5 and 9.3 years, respectively.

Table 1. Demographic and clinical data on participants in the entire study group and in the age groups.

Parameters	The entire study group	<35 years	≥35 years	p Value
Group size, n (%)	469 (100.0)	230 (49.0)	239 (51.0)
Age
Years, mean ± SD	36.4 ± 9.0	28.9 ± 4.5	43.6 ± 5.8
Years, median (Q1, Q3)	36 (30, 43)	30 (26, 33)	42 (38, 48)
Swedish as first language, n (%)				.172^a
Yes	436 (93.2)	218 (94.8)	218 (91.2)
No	32 (6.8)	12 (5.2)	20 (8.4)
Education, highest level, n (%)				<.001^a
Primary school	26 (5.5)	14 (6.1)	12 (5.0)
High school	185 (39.4)	117 (50.9)	68 (28.5)
Residential college/university	257 (54.8)	98 (42.6)	159 (66.5)
Employment or other activity, n (%)				<.001^a
Full-time work	246 (52.5)	99 (43.0)	147 (61.5)
Part-time work	82 (17.5)	39 (17.0)	43 (18.5)
Student	54 (11.5)	40 (17.4)	14 (5.9)
On sick-leave	48 (10.2)	23 (10.0)	25 (10.5)
On parental leave/pensioner/other	39 (8.3)	29 (12.6)	10 (4.2)
Past or present mental illness, n (%)				<.001^a
Yes	257 (54.8)	146 (63.5)	111 (46.4)
No	207 (44.1)	81 (35.2)	126 (52.7)
Have you unsuccessfully tried to become pregnant for a continuous period of 12 months? n (%)				<.001^a
Yes	160 (34.1)	57 (24.8)	103 (43.1)
No	308 (65.7)	172 (74.8)	136 (56.9)
Age at first symptoms of endometriosis				<.001^b
Mean ± SD	19.3 ± 7.8	16.7 ± 5.4	21.7 ± 8.8
Median (Q1, Q3)	17 (13, 24)	15 (13, 20)	19 (15, 28)
Patient’s delay				.227^b
Years, mean ± SD	3.3 ± 4.7	2.7 ± 3.6	3.9 ± 5.5
Years, median (Q1, Q3)	1 (0, 5)	1 (0, 4)	2 (0, 6)
Doctor’s delay				.014^b
Years, mean ± SD	6.5 ± 6.9	5.0 ± 4.5	8.0 ± 8.3
Years, median (Q1, Q3)	5 (1, 10)	4 (1, 8)	6 (1, 14)
Diagnostic delay				<.001^b
Years, mean ± SD	9.3 ± 7.6	7.5 ± 5.0	11.2 ± 9.1
Years, median (Q1, Q3)	8 (3, 14)	7 (3, 11)	10.5 (2, 18)

SD: standard deviation; Q₁: 25th percentile; Q₃: 75th quartile.

^a Pearson’s χ² test.

^b Mann–Whitney’s U-test.

When comparing the age groups, the older women generally reported longer patient’s delay, doctor’s delay and diagnostic delay (Table 1).

The lowest reported median value for PCS for the entire study group was for dimensions 5 (Emotional support) and 6 (Involvement of others), with median values of 0.00 for both dimensions. Moreover, the highest reported median value for PCS for the entire study group was for dimension 10 (Clinic staff), with a median value of 5.33. The older women scored significantly higher on PCS in dimension 4 (‘Physical comfort’), dimension 7 (‘Continuity and transition’), dimension 8 (‘Access to care’), dimension 9 (‘Technical skills’) and overall PCS, compared with the younger. On the contrary, the younger women scored higher on dimension 5 (‘Emotional support’) but both groups reported very low levels of PCS (Table 2).

Table 2. Comparison of PCS for dimensions of patient-centredness between age groups.

Dimension of PCEC		The entire study group	<35 years	≥35 years	p-value^a
PCS dimension 1, ‘Respect’	Mean ± SD	5.09 ± 3.70	4.82 ± 3.71	5.33 ± 3.69
	Median (Q1, Q3)	5.11 (2.44, 8.67)	4.94 (0.00, 8.67)	5.78 (2.89, 10.00)	.129
PCS dimension 2, ‘Coordination of care’	Mean ± SD	3.50 ± 2.86	3.31 ± 2.78	3.73 ± 2.93
	Median (Q1, Q3)	3.33 (1.00, 5.33)	3.25 (0.00, 5.00)	3.33 (1.33, 6.00)	.151
PCS dimension 3, ‘Information’	Mean ± SD	4.82 ± 2.81	4.69 ± 2.69	4.95 ± 2.91
	Median (Q1, Q3)	4.76 (2.67, 7.12)	4.70 (2.50, 6.81)	5.00 (2.69, 7.14)	.301
PCS dimension 4, ‘Physical comfort’	Mean ± SD	4.13 ± 2.85	3.84 ± 2.81	4.43 ± 2.86
	Median (Q1, Q3)	4.00 (2.25, 6.00)	4.00 (1.50, 6.00)	4.50 (3.00, 6.00)	.049
PCS dimension 5, ‘Emotional support’	Mean ± SD	0.86 ± 1.54	1.14 ± 1.72	0.58 ± 1.30
	Median (Q1, Q3)	0.00 (0.00, 1.50)	0.00 (0.00, 2.20)	0.00 (0.00, 0.00)	<.001
PCS dimension 6, ‘Involvement of others’	Mean ± SD	0.99 ± 2.10	1.24 ± 2.39	0.75 ± 1.76
	Median (Q1, Q3)	0.00 (0.00, 1.13)	0.00 (0.00, 1.75)	0.00 (0.00, 0.94)	.105
PCS dimension 7, ‘Continuity and transition’	Mean ± SD	4.60 ± 3.59	4.25 ± 3.49	4.93 ± 3.66
	Median (Q1, Q3)	4.11 (0.00, 7.33)	3.33 (0.00, 6.67)	5.00 (1.67, 8.67)	.041
PCS dimension 8, ‘Access to care’	Mean ± SD	4.46 ± 2.97	4.04 ± 2.94	4.87 ± 2.95
	Median (Q1, Q3)	4.08 (2.23, 6.67)	4.00 (2.00, 6.00)	5.04 (2.50, 6.80)	.002
PCS dimension 9, ‘Technical skills’	Mean ± SD	3.63 ± 3.21	3.16 ± 2.9	4.08 ± 4.43
	Median (Q1, Q3)	2.50 (0.00, 5.89)	2.50 (0.00, 5.00)	3.50 (0.00, 7.50)	.005
PCS dimension 10, ‘Clinic staff’	Mean ± SD	5.20 ± 3.63	4.90 ± 3.64	5.49 ± 3.60
	Median (Q1, Q3)	5.33 (2.89, 8.67)	8.89 (2.00, 8.67)	5.78 (2.89, 10.00)	.073
Overall PCS	Mean ± SD	3.73 ± 1.94	3.54 ± 1.86	3.93 ± 2.0
	Median (Q1, Q3)	3.46 (2.33, 5.12)	3.21 (2.24, 4.83)	3.75 (2.37, 5.52)	.044

PCS: patient centeredness score; PCEC: patient-centred endometriosis care; SD: standard deviation; Q₁: 25th percentile; Q₃: 75th quartile.

^a Mann–Whitney’s U-test.

Statistically significant correlations between age and PCS were found in dimension 5 (‘Emotional support’) (correlation coefficient −0.072), dimension 8 (‘Access to care’) (correlation coefficient 0.109) and dimension 9 (‘Technical skills’) (correlation coefficient 0.118) (Table 3).

Table 3. Correlations between patient-centeredness and age.

Dimension of PCEC	Correlation coefficient	p-value^a
PCS dimension 1, ‘Respect’	0.040	.387
PCS dimension 2, ‘Coordination of care’	0.061	.191
PCS dimension 3, ‘Information’	0.037	.429
PCS dimension 4, ‘Physical comfort’	0.066	.159
PCS dimension 5, ‘Emotional support’	–0.190	<.001
PCS dimension 6, ‘Involvement of others’	–0.072	.133
PCS dimension 7, ‘Continuity and transition’	0.080	.092
PCS dimension 8, ‘Access to care’	0.109	.019
PCS dimension 9, ‘Technical skills’	0.118	.011
PCS dimension 10, ‘Clinic staff’	0.064	.169
Overall PCS	0.066	.154

PCS: patient centeredness score; PCEC: patient-centred endometriosis care.

^a Spearman’s correlation test.

Discussion

The aim of this study was to investigate if women younger or older than 35 years have different experiences of patient-centeredness in endometriosis care. The findings mainly confirm our hypothesis that younger women experience the endometriosis care as less patient-centred than older women. For caregivers, it is essential to be aware of which patients are at risk for experiencing low patient-centeredness in order to target improvements and distribute healthcare recourses (Geukens et al. 2018).

One reason for the higher PCS among older women could be that they have developed better strategies to handle symptoms associated with endometriosis. Another reason could be a higher probability of finding a symptom-relieving medical treatment or to have undergone surgery. This is in line with Lövkvist et al. who concluded that younger women with endometriosis experience more symptoms than older women (Lövkvist et al. 2016). When a patient experiences fewer symptoms and gets less affected by the disease in her everyday life, she may also be more contented with endometriosis care and experience the care as more patient-centred. Older women might also have had time to develop a well-functioning contact with a doctor or other professionals at the clinic.

Table 1 illustrates that the younger age group answered ‘yes’ on the question ‘past or present mental illness’ to a greater extent than older women, which is consistent with reports showing that mental illness in young people is increasing in Sweden (Public Health Agency of Sweden 2018). Even though younger women reported a higher incidence of mental illness, they experienced a higher level of emotional support and alleviation of fear and anxiety compared with older women. Maybe an increasing awareness and attention of endometriosis and mental illness in media, by health professionals and in the general population during the last years could explain these findings. The national program for endometriosis care in Sweden underlines the importance of supportive conversation and multi-professional care, including a counsellor (National Board of Health and Welfare 2018; Swedish Society of Obstetrics and Gynecology 2021). Also, persons with past or present mental illness may already have a well-functioning professional therapeutic contact. However, both groups scored very low on this dimension and the difference between the age groups may therefore not be clinically relevant.

A recent study on medical characteristics and demographic factors associated with patient-centeredness in endometriosis care analysed age as a possible determinant for PCS. No significant correlation was found (Schreurs, Dancet, et al. 2020), which contradicts the results of our study. There are several possible explanations for this discrepancy, such as different study populations, different healthcare systems and types of clinics.

A few studies have used ECQ previously and include data comparable with the current study. The overall PCS in our study was 3.46, which is similar with Grundström et al. (2020), who found a median of 3.6 and Schreurs, van Hoefen Wijsard, et al. (2020) found a median of 4.8 for a secondary centre and 4.5 for a tertiary centre.

There are some limitations of the study. First, the women were asked to rate the endometriosis care based on an overall assessment of the care they received over time which may cause recall bias. The selection of the women who received the ECQ was randomised, but the ones who answered the questionnaire might have personal reasons.

One strength of this study was the random selection of participants. Another strength is that the questionnaires were sent to women from 10 different clinics in Sweden, resulting in a geographic distribution and hospitals of different sizes The proportion of academics in the study group was 55%, indicating that they had a similar socioeconomic level as an age- and gender-matched Swedish population where 52% are academics (Statistics Sweden 2021).

The findings of this paper show tendencies that younger women experience endometriosis care less patient-centred than older women. Combined with studies showing that younger women seek more care, express more symptoms (Grundström et al. 2020) and experience a lower HRQoL than older women (Lövkvist et al. 2016), these findings indicate that more health care recourses should be allocated to younger women. Further research is needed to identify other factors, except age, that contributes to the experience of patient-centeredness. In the future, studies should also move from observational design towards randomised controlled trials to evaluate how different interventions can improve patient-centeredness.

Conclusions

Younger women rate the endometriosis care as less patient-centred than older women within several dimensions of PCEC. Our findings highlight the need of improvement within endometriosis care, especially for younger women.

Acknowledgements

We would like to thank all the respondents who answered the ECQ in our study. We would also like to thank all contact persons who helped us find eligible participants at their clinics:

Helena Kilander at Höglandssjukhuset in Eksjö, Anna-Sofia Melin at Capio Gynekologi Globen in Stockholm, Johanna Nordengren at Skåne University Hospital in Malmö, Robin Wilding at Falu lasarett in Falun, Mantre Öjersjö at Länssjukhuset i Kalmar in Kalmar, Eva Karin Sjömäling at Östersunds sjukhus in Östersund, Mattias Pålsson at Kvinnokliniken Carlanderska in Gothenburg, and Måns Palmstierna Burenius at Sollefteå sjukhus in Sollefteå.

Disclosure statement

The authors report there are no competing interests to declare.

Data availability statement

Data are not available due to ethical reasons.

Additional information

Funding

The study was supported by the Medical Research Council of Southeast Sweden under Grant [FORSS-964282] and by Stiftelsen Tornspiran.