Patient Expectation Management




(1)
Dermatologische Praxis & Haarcenter, Wallisellen (Zürich), Switzerland

 





It is easier to write a prescription than to come to an understanding with the patient.

Franz Kafka (1883–1924), A Country Doctor

Hair loss is a common dermatologic problem, and few dermatologic problems carry as much emotional overtones as the complaint of hair loss. Adding to some patient’s worry may be prior frustrating experiences with physicians, who tend to trivialize complaints of hair loss or dismiss them completely. This attitude on the part of physicians is related either to lack of comprehension of the impact of hair loss on quality of life or to lack of confidence in the treatment of alopecia.

Treatment options are available, though limited, both in terms of indications and of efficacy. Success depends not only on comprehension of the underlying pathology but also on unpatronizing sympathy from the part of the physician.


3.1 Listening to the Patient


For a successful encounter at an office visit, one needs to be sure that the patient’s key concerns have been directly and specifically solicited and addressed. To be effective, the physician must gain an understanding of the patient’s perspective on his/her illness. Patient concerns can be wide ranging, including fear of hair loss and disfigurement; apprehension of scalp symptoms; distrust of the medical profession or of pharmacologic agents; concern about loss of wholeness, role, status, or independence; denial of reality of medical conditions; grief; and other uniquely personal issues. Patient values, cultures, and preferences need to be explored. Gender is another element that needs to be taken into consideration. Ensuring key issues are verbalized openly is fundamental to effective patient–doctor communication. Appropriate reassurance or pragmatic suggestions to help with problem solving and setting up a structured plan of action may be an important part of the patient care that is required.

Psychological research confirms a negative effect of visible hair loss on social perceptions and body image satisfaction. Therefore, a thorough evaluation, a specific diagnosis, effective treatment, and appropriate counseling can be expected to have some psychological efficacy.

In 1992, Cash examined psychological effects of androgenetic alopecia in men and found that although most men regard hair loss to be an unwanted, distressing experience that diminishes their body image, bald men actively cope and generally retain the integrity of their personality functioning (Table 3.1).


Table 3.1
Percentage of men attributing specific effects to the occurrence of androgenetic alopecia




























































































Reported experience

Extentof hair loss

Low

High

Cognitive preoccupation

Wish for more hair

52

84

Notice bald/balding men

54

82

Spend time looking in the mirror at hair/head

54

69

Wonder what others think

47

67

Negative socio-emotional events

Get teased by peers

45

79

Feel self-conscious

42

78

Look older than actual age

40

55

Worry that others will notice

39

56

Feel helpless about baldness

37

56

Worry about aging

37

46

Feel less attractive

31

51

Envy good-looking men

33

34

Behavioral coping

Try to improve hairstyle

63

66

Try to improve physique

41

36

Dress more nicely

26

45

Wear hats or caps

23

41

Seek reassurance about looks

23

39

Grow beard or mustache

18

36


From Cash TF (1992) The psychological effects of androgenetic alopecia in men. J Am Acad Dermatol 26:926–931

Subsequently, Cash compared psychological effects of androgenetic alopecia on women with balding men and found that androgenetic hair loss was clearly a stressful experience for both sexes, but substantially more distressing for women. Relative to control subjects, women with androgenetic alopecia possessed a more negative body image and a pattern of less adaptive functioning (Table 3.2).


Table 3.2
Descriptions of female androgenetic alopecia patients’ specific effects attributed to hair loss
































































































































Effects attributed to hair loss

%

Adverse effects

Wish I had more hair

98

Think about my hair loss

97

Try to figure out if I am losing more hair

95

Feel frustrated or helpless about my hair loss

93

Spend time looking at my hair in the mirror

92

Worry about my looks

92

Feel self-conscious about my looks

92

Have negative thoughts about my hair

91

Worry about whether others will notice my hair loss

90

Worry about how much hair I am going to lose

89

Notice people who are balding

83

Think about how I used to look

78

Notice what other people look like

78

Have the thought, “why me?”

75

Think I am not as attractive as I used to be

72

Wonder what other people think about my looks

71

Have thoughts that I am unattractive

68

Try to think what I would look like with more hair loss

67

Feel depressed or despondent

63

Worry about getting older

62

Worry that my spouse or partner will find me less attractive

60

Feel embarrassment

55

Feel envious of good-looking people of my sex

53

Feel sensitive to personal criticism

50

Am conscious of how others react to me

43

Feel I look older than I am

42

People comment about my hair loss

36

Get friendly teasing or kidding from others

20

Behavioral coping

Try to figure out what to do about my hair loss

98

Try to hide my hair loss

94

Talk to my hairstylist about my hair loss

82

Try to improve my hairstyle

79

Do things to improve my looks

75

Talk to friends of my own sex about my hair loss

71

Spend time on my appearance

70

Talk to my partner about my hair loss

64

Seek reassurance about my looks

62

Try to improve my figure or physique

44


From Cash TF, Price VH, Savin RC. Psychological effects of androgenetic alopecia on women: comparisons with balding men and with female control subjects. J Am Acad Dermatol 1993;29:568–575

Patients’ psychological reactions to hair loss are less related to physicians’ ratings than to patients’ own perceptions of the extent of their hair loss. Even in women with slight hair loss, that loss is imbued with considerable emotional meaning that the physician should not ignore.

Physicians should recognize that androgenetic alopecia goes well beyond the simple physical aspects of hair loss and growth.

Ultimately, androgenetic alopecia is not uniform in its psychological impact. Among men, Cash identified several variables predictive of greater androgenetic alopecia-related distress:



  • Younger men (under 26 years old) with earlier-onset hair loss


  • Romantically unattached men


  • Those who view their alopecia as socially noticeable and expect it to progress


  • Men with a heightened social (public) self-consciousness, a vulnerable sense of self-acceptability, and a higher psychological investment in their appearance

Often, hair loss may first become apparent at particularly demanding periods of life, such as during the period of mate selection or at the onset of a challenging career. At such times, the afflicted may find hair loss especially upsetting and even use it as a scapegoat for a lack of satisfaction in other areas of life.

Left to their own resources, individuals with androgenetic alopecia engage in a number of strategies to cope with the unwanted conditions, such as:



  • Styling the remaining scalp hair to conceal thinning areas.


  • Using cosmetic products to camouflage hair loss.


  • Wearing caps or hats to conceal the condition.


  • Avoiding situations that aggravate distress by making the hair loss more socially recognizable, e.g., wet hair and windy or brightly lit environments.


  • Compensating for the diminished body image by growing a beard or improving grooming and physique.


  • Paradoxically shaving the entire head to hide hair loss.

Patients who have concluded that the above strategies, or over-the-counter treatments, are insufficient to abate their distress finally consult professionals for medical or surgical solutions.

With the advent of pharmacologic agents, such as topical minoxidil solution and oral finasteride, and improved surgical hair transplantation procedures for effective treatment of androgenetic alopecia, the options for managing androgenetic alopecia and androgenetic alopecia-related distress have expanded.

In 1991, van der Donk et al. conducted a prospective study of the psychological changes in men who received either 2 % topical minoxidil solution or placebo and found favorable changes in psychological adjustment and self-image among responders to topical minoxidil solution compared to placebo recipients, but only in the group aged above 35 years.

In a study of 1,495 men aged 20–40 years who suffered from androgenetic alopecia and were subjected to treatment with 5 % topical minoxidil solution in the setting of two private dermatologic practices, Mapar and Omidian found that almost all the patients gradually avoided continuing the treatment. Only in a few patients was the cessation of medication due to adverse effects. The causes of discontinuation in the majority of patients were the low effect of medication and an aversion to this topical treatment method. The authors concluded that the insignificant cosmetic effect of minoxidil solution caused discontinuity of treatment among almost all patients.

Therefore, treatment of male androgenetic alopecia in the 20 to 40 years age group with oral finasteride would seem to be more reliable than topical minoxidil.

In 2011, a study was performed in Japan by Tsuboi et al. in order to ascertain whether treatment with 1 mg oral finasteride can improve the quality of life of male patients with androgenetic alopecia. Patients aged 19–76 years (average, 33.8) answered Visual Analogue Scale (VAS), Dermatology Life Quality Index (DLQI), WHO/QOL-26, and State-Trait Anxiety Inventory (STAI) questionnaires before and after administration of oral finasteride for 6 months. The changes in these indices before and after treatment were statistically analyzed, and the improved values of the indices in the high treatment responders (excellent or good) and the low treatment responders (moderate or no change) from baseline were compared. There was a statistical difference in the VAS and DLQI indices before and after administration of oral finasteride, while no significant change was found for the WHO/QOL-26 and STAI indices. Interestingly, comparison of high and low responders failed to reveal any statistical difference in the improvement of VAS and DLQI scores. The authors concluded that oral finasteride improves the quality of life of men treating androgenetic alopecia and VAS and DLQI are useful for the evaluation of patients’ quality of life. However, oral finasteride failed to improve the patients’ anxiety, nor did its efficacy correlate with the level of reported anxiety.


3.2 Educating the Patient


Patient understanding and involvement are central to optimal treatment selection and active patient role in treatment. This maximizes patient benefit and safety.

Patient education is more than a simple transfer of information. Printed material, visual and audio aids, and staff trained to interact and educate patients are all helpful. But the physician should also directly review information with patients to confirm the effectiveness of the communication and appropriateness of patient expectations. Such a review also enhances rapport and communicates a sense of caring that fosters trust.

Understanding, emotion, satisfaction, rapport, and empathy are among the factors involved. In talking with a patient, a physician should attempt to learn what the patient expects and help shape those expectations to match the physician’s intention. If the patient forms different expectations than those the physician is attempting to communicate, the physician needs to direct the dialogue to eliminate this expectation gap.

Every time a patient says, “I didn’t know…,” one has an opportunity to consider how to better communicate the information in the future.

Finally, patients read the unspoken language of physicians: Does the doctor look them in the eye or stare at the computer screen? Is he or she standing up or sitting down when addressing the patient? Does he or she frequently look to the door? If patients are asking the receptionist questions that they should be asking the physician, the doctor needs to find out why. Perhaps a change in body language or improved communication with the patient is needed. To ensure that communication goals are achieved, the physician must also pay attention to the patient’s nonverbal cues. Listening to the patient must be active—acknowledging and encouraging while sharing agreement and disagreement in an empathic manner.

A patient’s hopes and wishful thinking introduce an unconscious dissonance between the patient’s understanding of what the physician says and the patient’s expectation of the outcome.

Although it may appear that efforts to communicate more effectively may demand more time, mindful communication that picks up on cues from the patient could result in less time spent reviewing information. It is not so much a matter of more time as it is of using and tailoring the time for each patient’s need.


3.3 Creating Reasonable Expectations


Patient expectation management is the art of supporting patients in knowing how to be right and when to be satisfied. Managing expectations is a process of creating the structure that is necessary for achieving trust and confidence from the patient and, ultimately, patient satisfaction.

Patients expect two sorts of value from their attending physicians: rational value and emotional value. Rational value results from appointment management, the process of examination, technical procedures, and follow-up scheduling. Emotional value is the way the patient feels about having been cared for.

How does a patient develop expectations? Patients learn from a number of sources: from family, friends, and others who have experienced treatment, from conventional news sources, and from Internet sites with information of variable quality, potential bias, and sensationalism. Finally, the patient’s own past experience contributes significantly to future expectations.

Remember, probably the most frequent cause for difficult patient encounters are prior negative patient experiences with physicians, who tend to trivialize the complaint of hair loss and its treatment.

Both, the understanding of the patient and his or her values, and the patient’s apprehension of the attending physician as an individual, rather than as a professional, contribute to emotional value. One way to deliver emotional value is to provide information about oneself before meeting the patient: for example, a website and brochure declaring one’s philosophy of care are convenient vehicles for this purpose. Also, public appearance and the social media may be highly effective in directing information to patients. All forms of communication create expectations from patients. Finally, the patient’s understanding depends not only on the material received but also on the way the patient assimilates that information and translates into actionable beliefs, based upon cultural and individual values as well as past experiences.

Patients’ expectation, not ours, is the yardstick by which our patients measure the course of recovery, occurrence of complications, and the outcome.

The Latin maxim tuto, celeriter, et iucunde stands for “safely, swiftly, and gladly” and was originally coined by Asclepiades of Bithynia (124–56 BC), personal physician and near friend of notable personalities of Ancient Rome, such as Cicero and Mark Antony. While the foreign Greek physicians were originally encountered with much distrust by ancient Romans and especially its aristocracy, Asclepiades managed to convince through his high learning, brilliant medical achievements, and worldly wisdom. Above all, he was always attentive and sympathetic to the individual needs of his patients.

Asclepiades was born in Prusa. He travelled much when young and at first settled at Rome as a rhetorician. Though he did not succeed in that profession, he eventually acquired great reputation as a physician. Asclepiades began by vilifying the principles and practices of his predecessors and by asserting that he had discovered a more effective method of treating diseases than had been before known to the world. His remedies were directed to the restoration of harmony. A part of the great popularity which Asclepiades enjoyed depended upon his attending to every need of his patients and indulging their inclinations. Finally, Asclepiades advocated humane treatment of mental disorders. His teachings are surprisingly modern; therefore, Asclepiades is considered to be a pioneer physician in both the medical sciences and psychotherapy.

The same way Asclepiades won the Roman populace and aristocracy for his cause, the physician must advance to build up his reputation and to secure the confidence of his patients.


3.4 Satisfaction Survey


Also, satisfaction survey questions help create expectations. It is in one’s best interest to distribute and review surveys to patients. At the next team meeting, team members should be asked to complete the patient satisfaction survey themselves as they believe most patients would. When the actual survey results are received, they should be compared with the team’s predicted results to identify expectation gaps and what changes would be needed to improve your scores.

The patient satisfaction survey verbatim responses provide information about how patient expectations are met. One should take the time to review those comments, since they will reinforce the emotional and rational value of one’s care for patients.

Just as providing a checklist for patients is helpful in encouraging follow-through, a checklist for one’s proper practice may also be a valuable prompt for enhanced performance. One should consider developing a checklist to increase adherence to the standards created by the satisfaction surveys.

Asking for feedback is a way to identify gaps. Asking for feedback can satisfy a patient’s need to let one know that something needs improvement. The patient who is given that opportunity may be less likely to vent frustration in an online chat room.

Having patients verbalize their expectations and guiding them should be a part of any communication; a conscious effort will improve effectiveness. With these efforts, a patient is less likely to feel abandoned in any case of perceived failure.


3.5 Special Patient Groups


Although testing medical interventions for efficacy had existed since Avicenna (Latinate form of Ibn-Sīnā, Persian polymath regarded as one of the most significant thinkers of the “Islamic Golden Age” and described as the “Father of Early Modern Medicine,” 980–1037), it was only in the twentieth century that this effort evolved to impact almost all fields of healthcare and policy. Evidence-based medicine (EBM), as established by Alvan Feinstein (American physician and mathematician, 1925–2001) and Archie Cochrane (Scottish physician, 1909–1988) in the 1970s, aims at applying the best available evidence to clinical decision making, using techniques from science, engineering, and statistics, such as systematic review of medical literature, meta-analysis, risk–benefit analysis, and randomized controlled trials (RCTs). Ultimately, EBM aims for the ideal that healthcare professionals should make conscientious, explicit, and judicious use of current best evidence in everyday practice.

However, EBM guidelines do not remove the problem of extrapolation to different patient populations, specifically, certain groups have been historically under-researched, such as special age groups, ethnic minorities, and people with comorbid conditions, and thus the literature is sparse in areas that do not allow for generalizing.


3.5.1 Children


Biologically, a child is a human between birth and puberty. The legal definition of child refers to a minor, otherwise known as a person younger than the age of majority. Recognition of childhood as a state different from adulthood began to emerge only in the sixteenth and seventeenth centuries, when society began to relate to the child not as a miniature adult but as a person of a lower level of maturity needing adult protection, love, and nurturing.

Pediatrics is the branch of medicine that deals with the medical care of children (and adolescents) with the age limit ranging from birth up to 18 years. Pediatrics is a relatively young medical specialty, developing only in the mid-nineteenth century. Abraham Jacobi (1830–1919) is regarded as the father of pediatrics.

The body size differences are paralleled by maturational changes. The smaller body of a neonate, infant, or child is substantially different physiologically from that of an adult.

Congenital defects, genetic variance, and developmental issues are of greater concern to pediatricians than they often are to adult physicians.

Another major difference between pediatrics and adult medicine is that children are minors and, in most jurisdictions, cannot make decisions for themselves. The issues of guardianship, privacy, legal responsibility, and informed consent must always be considered in every pediatric procedure.

In a sense, physicians dealing with children often have to treat the parents and, sometimes, the family, rather than just the child.

Finally, the issues of pediatric nutrition and pediatric dosage in pharmacotherapy are to be taken into consideration. Pediatric nutrition refers to the maintenance of a proper well-balanced diet consisting of the essential nutrients and the adequate caloric intake necessary to promote growth and sustain the physiologic requirements at the various stages of a child’s development.

Nutritional needs vary considerably with age, level of activity, and environmental conditions, and they are directly related to the rate of growth.

Pediatric dosage relates to the determination of the correct amount, frequency, and total number of doses of a medication to be administered to an infant or child. Various formulas have been devised to calculate pediatric dosage from a standard adult dose, although the most reliable method is to use one of the formulas to calculate the proportional amount of body surface area to body weight.

Such variables as the ability of the child to absorb, metabolize, and excrete the medication must be considered, as well as the expected action of the drug, possible side effects, and potential toxicity.

Specifically, children are at higher risk of cardiovascular adverse effects of minoxidil solution, from both topical application and accidental ingestion. Claudet et al. reported a case of significant intoxication after the ingestion of topical minoxidil solution. A 7-year-old girl, who accidentally ingested a teaspoon of minoxidil solution (Alopexy®, Laboratoires Pierre Fabre, SA, Switzerland), presented to the pediatric emergency ward with emesis, a blood pressure of 86/56 mmHg, and a pulse of 149 beats per minute. Hypotension lasted 40 h with the lowest value 24 h after ingestion (79/33 mmHg). Infusion of 20 mL/kg of normal saline fluid had no hemodynamic effect. Her blood pressure normalized on day 2. The authors concluded that topical minoxidil solution is an unsafe product for children and therefore should be strictly kept out of reach of children. Moreover, manufacturers should enhance child-resistance security of packaging.

Generalized hypertrichosis is a common side effect of oral minoxidil treatment for hypertension. However, hypertrichosis is uncommon after treatment with topical minoxidil for alopecia and normally only occurs in areas close to the site of application. González et al. reported a 16-year-old girl who developed generalized hypertrichosis 3 months after applying topical minoxidil for treatment of alopecia in doses greater than prescribed. Four months after discontinuing treatment, the abnormal hair gradually diminished and disappeared.

Alopecia in childhood is a source of high concern, frustration, and anxiety.

Young children usually lack self-awareness and it may be the parents who, projecting their own concerns onto the child, most acutely feel any associated anxiety. In addition, parents of a child with an inherited hair condition may feel guilt, and siblings can develop unsupported fears that they may be affected. Hair loss for the older child can lead to low self-esteem, depression, and humiliation. Ultimately, hair loss in children can have psychological effects that interfere with a child’s normal development.

Delineating types of alopecia and those that are chronic or potentially related to underlying medical problems is important.

The proportion of children under the age of 10 years among patients complaining of hair loss in a dermatologic clinic is 5 %. Pediatric alopecia is caused by a number of conditions, and patterns are different from those seen in adults. A thorough understanding of normal hair development enables accurate assessment of the child with hair loss. Knowledge of the normal range and variation observed in children’s hair additionally enhances this assessment. Examples are transient neonatal hair loss (Fig. 3.1), trichoglyphics (hair-slope patterns), such as the cowlick (Fig. 3.2) and ridgeback anomaly (Fig. 3.3), scalp whorls (Fig. 3.4), and to some extent short anagen syndrome.

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Fig. 3.1
Transient neonatal hair loss

Jun 3, 2017 | Posted by in Dermatology | Comments Off on Patient Expectation Management

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